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ability Magazine of Spina Bifida Hydrocephalus Ireland Annual Conference 2014 Edition Autumn 2014 my say my way positive life choices presents

Ability Magazine - Autumn 2014

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  • abilityMagazine of Spina Bifida Hydrocephalus Ireland

    Annual Conference 2014 Edition

    Autumn 2014

    my say

    my way

    positive life choicespresents

  • Chairmans Address & ContentsChairmans Address & Contents

    2 www.sbhi.ie

    Spina Bifida Hydrocephalus Ireland (SBHI)National Resource Centre: Old Nangor Road, Clondalkin, Dublin 22.Tel: (0I) 457 2329 Fax: (01) 457 2328 Lo-call: 1890 20 22 60Email: [email protected] Website: www.sbhi.ie

    Ability magazine:Editor: Thelma Cloake Tel: 087-2883279 Email: [email protected]

    A WORD FROM THE EDITOR:I would like to take this opportunity

    to thank all those people whocontributed to the Abilitymagazine.

    I hope you will enjoy readingthis issue.

    Thelma Cloake Tel: 087-2883279 Email: [email protected]

    Chairmans AddressAs this is the first magazine since Iwas elected chairman I would liketo thank you the members and thebranches for giving me thehonour of being your chairmanand for supporting me in thisrole. I hope that I can fulfil yourexpectations of me while I am inthis position.

    I would like to take this oppor-tunity to acknowledge the workthat was done by George Kennedyand to take this opportunity to

    wish him well in the future. The work of the organisation iscontinuing and we have just come off the back of a very successfulSHINE project which we got great feedback from. The PeerSupport Group continues to go from strength to strength and theFamily Support Workers and all our staff continue to be an integralpart of the work of SBHI.

    The Saturday Club is also continuing to be a great success andthanks to Andrea for her tireless work in that regard.

    The International Federation continues to provide support to us asa national organisation and we continue to be represented byThelma on that. The International Federation will be well repre-sented at our conference and there will be plenty of opportunitiesfor you our members to find out more about what they do.

    I believe the conference has a great line-up this year and I have nodoubt that many will be inspired and motivated by the speakerswe have lined up.

    I look forward to seeing you all at the conference and hope thatyou all enjoy this edition of the magazine and indeed theconference.

    Frank Larkin, Chairman, Spina Bifida Hydrocephalus Ireland,

    www.sbhi.ie, [email protected]

    In this issue:l Chairmans Address l SBHIStaff List and

    Contact Detailsl Packie Bonner Golf Classic

    l Influenza (Flu)l 12 Marathons 12 Days

    l Catherines Storyl SAP Volunteers

    l Wheelchair Rugby 7sl World Spina Bifida & Hydrocephalus Day

    l Double Celebrations for Seanl Positive Life Choices

    My Say, My Way:Agenda & Biographies

    l Educational Officer Updatel Special Needs Bank Account

    l Me and My Backbonel SBHI Peer Support

    l Eurordisl SHINE 2014

    l Around the Countryl Orthopaedic Footwear Centre

  • www.sbhi.ie 3

    SBHI Staff & ContactsSBHI Staff & Contacts

    Name Post Phone & Email

    Andrea Fox Reception 014572329 [email protected]

    Linda Morrison Accounts 014572329 [email protected]

    Katy McManus Administration 014572329 [email protected]

    Sarah Jacobsen Family Support Worker:

    Laois/Offaly; Longford/ Westmeath

    0857119062

    [email protected]

    Hazel McGeough Family Support Worker:

    Cavan/Monaghan; Louth/Meath; North Co. Dublin

    0868194790

    [email protected]

    Katie Dunphy Educational Officer 014572329 0873792051

    [email protected]

    Clare Riordan Family Support Worker:

    South Dublin/ Wicklow

    014572329 0872209625

    [email protected]

    Jane Mullane Family Support Worker: South East including

    Waterford/Sth Tipperary, Carlow, Kilkenny, Wexford

    0876527175

    [email protected]

    Aine Harrington Family Support Worker:

    Mayo, Leitrim, Roscommon, Sligo, Galway

    0879395371

    [email protected]

    Edel Browne Curran Family Support Worker:

    North Dublin and Co. Kildare

    014572329 0868520616

    [email protected]

    Deirdre Gallagher Family Support Worker:

    Cork/Kerry

    0868194791

    [email protected]

    Louise Healy Manager Youth & Respite Services 014572329 0857119087 [email protected]

    Helen Riney Youth & Respite Coordinator 014572329 [email protected]

    Peter Landy Fundraiser 0877376351 [email protected]

    SBHI STAFF LIST AND CONTACT DETAILSNational Resource Centre, Old Nangor Road, Clondalkin, Dublin 22

    Phone: 014572329 Fax: 014572328 [email protected]

    SBHI Orthopaedic Footwear CentreNational Resource Centre, Old Nangor Road, Clondalkin, Dublin 22

    Phone: 014572326 Fax: 014056056 [email protected] Footwear Mobile 0868517518Contact: Karen Malone 014572326 [email protected]

    Dublin Branch: Vickie Green, Block 5, Unit 2, Port Tunnel Business Park, Clonshaugh, Dublin 17

    Phone: 018485227 Fax: 018485228 Email: [email protected]

    SBHI Resource Centre:Alice Rajaratnam & Aisling Nic Eochaidh

    Block 5, Unit 1, Port Tunnel Business Park, Clonshaugh, Dublin 17.Phone: 018487311 Email: [email protected]

  • Golf ClassicGolf Classic

    4 www.sbhi.ie

    A total of 32 teams took to the beautifulSmurfit course at the K Club on the 22nd ofAugust for our annual Packie Bonner GolfClassic.

    The delightful weather matched the mood ofthe participants as they took to the course forthe 12.30pm shotgun start. The golferscommented on the fantastic condition of thecourse and enjoyed playing their 18 holesimmensely. There were two competitionsrunning side by side, the Packie BonnerPerpetual Trophy for qualifying teams and ourmain corporate competition.

    After golf everybody returned to theclubhouse for our customary after golf mealand presentations. Our patron Packie Bonneracted as the master of ceremonies and spokevery highly of his involvement with Spina BifidaHydrocephalus Ireland and his reasons forsupporting the organisation. The lovely mealwas followed by an auction of donated itemsfor which there was great interest from thosepresent. We also had our customary blind rafflewhich was a great success on the night.

    The Packie Bonner Perpetual Trophy was wonby the team: Donal Corbett, Brendan Casey,Liam Fitzgerald and Declan Keegan with ascore of 99 points. Donal also won the longestdrive competition with Joe Pardy picking upthe prize for nearest to pin.

    The prize-winners for the corporate classicincluded:

    l 1st Prize (105 points): Alan Murphy, JimODonoghue, Brendan Murphy & JohnBermingham

    l 2nd Prize (104 points): Paul Boyle, TommyGrindle, Darren Delaney & Liam Delaney

    l 3rd Prize (101 points): Eamonn Porter, DaveNolan, Paul OReilly & Tom Watters

    l 4th Prize (99 points): John Kavanagh,Tommy Gaskin, Freddie Snow & EugeneWard

    l 5th Prize (97 points): Fergal Britton, AidanGordon, Mark Doherty & Kieran Coffey

    l 6th Prize (97 points): Paul Landy, KieranMescal, David Minogue & ConorODonovan.

    SBHI wishes to congratulate the winners andthank all our participants and sponsors fortheir continued support of this event. n

    PACKIE BONNER GOLF CLASSICK CLUB AUGUST 2014

    Some of the groups who enjoyed the day

  • www.sbhi.ie

    HealthHealth

    Influenza (Flu)Source: H.S. E.

    Who is most at risk from flu?Anyone can get the flu but it is more severe inpeople aged 65 years and over and anyonewith a chronic medical condition. Chronicmedical conditions include chronic heartconditions, chronic respiratory disease,diabetes mellitus and immunosupression dueto disease or treatment. Pregnant womenhave also been found to be at increased riskof the complications of flu. These groups ofpeople are targeted for influenza vaccination.

    Flu Vaccine Who should be vaccinated?Vaccination is strongly recommended for:

    n Persons aged 65 and overn Those aged 6 months and older with a

    long-term health condition such as Chronic heart disease Chronic liver disease Chronic renal failure Chronic respiratory disease, including

    cystic fibrosis, moderate or severeasthma or bronchopulmonarydysplasia

    Chronic neurological diseaseincluding multiple sclerosis, hered-itary and degenerative disorders ofthe central nervous system

    Diabetes mellitus Down syndrome Haemoglobinopathies Morbid obesity i.e. body mass index

    over 40 Immunosuppression due to disease

    or treatment, including asplenia orsplenic dysfunction

    n Children aged 6 months and older with any condition (e.g. cognitive

    dysfunction, spinal cord injury, seizuredisorder, or other neuromusculardisorder) that can compromise respi-ratory function especially thoseattending special schools/day centreswith moderate to severe neurodevel-

    opmental disorders such as cerebralpalsy and intellectual disability

    on long-term aspirin therapy(because of the risk of Reyessyndrome)

    n Pregnant women(vaccine can begiven at anystage ofpregnancy)

    n Healthcareworkers

    n Residentsof nursinghomes andother longstay institu-tions

    n Carersn People with

    regular contactwith pigs, poultryor water fowl. n

    What is influenza (flu)?Influenza is a highly infectious, acute, respi-ratory illness caused by the influenza virus.Influenza affects people of all ages. Outbreaksof influenza occur almost every year, usually inwinter. This is why it is also known as seasonalflu.

    How serious is flu?Flu is often self limiting with most peoplerecovering in 2-7 days. However, flu can besevere and can cause serious illness anddeath, especially in the very young and in theelderly. Serious respiratory complications candevelop, including pneumonia and bronchitis,to which older people and those with certainchronic medical conditions are particularlysusceptible. Pregnant women have also beenfound to be at increased risk of the complica-tions of flu. Some people may need hospitaltreatment and a number of mainly olderpeople die from influenza each winter.

    How do people catch flu?Flu is a highly infectious illness. A personcarrying the virus can spread the illness bycoughing or sneezing. A person can spreadthe virus from 1-2 days before they developsymptoms and for up to a week aftersymptoms develop.

    What are the symptoms of flu?Flu symptoms hit you suddenly and severely.Symptoms of flu include:

    n sudden fever,n chills,n headache,n myalgia (muscle pain),n sore throat,n non-productive dry cough.

    Is it seasonal flu or the common cold?It can be difficult at times to tell the differencebetween the common cold and flu. A cold is amuch less severe illness than flu. The flusymptoms come on suddenly with fever andmuscle aches. A cold usually starts graduallywith symptoms of a sore throat and a blockedor runny nose.

    Table of Symptoms

    The following table provides information onhow to distinguish between seasonal flu andcold symptoms:

    Symptoms Seasonal Flu Cold__________________________________________________________Fever High fever lasts 3-4 days Rare__________________________________________________________Headache Prominent Rare__________________________________________________________General Aches, Pains Usual; often severe Slight__________________________________________________________Fatigue, Weakness Can last up to 2-3 weeks Quite mild__________________________________________________________Extreme Exhaustion Early and prominent Never__________________________________________________________Stuffy Nose Sometimes Common__________________________________________________________Sneezing Sometimes Usual__________________________________________________________Sore Throat Sometimes Common__________________________________________________________Chest Discomfort, Common; Mild to moderate; Cough can become severe hacking cough

    5

  • Marathon ManMarathon Man

    6 www.sbhi.ie

    A young man called Shane Finn fromDingle in Co. Kerry decided to run fromDublin to Dingle over 12 days covering26.2 miles per day to raise funds forSpina Bifida Hydrocephalus Ireland.

    On the 3rd of June 2014 Shane departedthe Phoenix Park in Dublin running his firstleg to Celbridge in Co. Kildare. Aftercompleting the first leg successfully, Shanevisited Andreas Fun Club members in Kill,Co. Kildare.

    Day 2 took Shane from Celbridge to outsideof Kildare town having passed throughClane, Naas and Newbridge. Shane finishedoutside TP Watters Garage at 4.20pm. Afterday 2, Shane had a slight niggle in his kneeand was brought to a physiotherapist livingdown at the Curragh camp. Our campervanalso broke down on this day and was sentto the garage for repairs.

    Day 3 saw Shane run from Kildare Town toTullamore, Co. Offaly. Once again he had byhis side his father, Tim, on his bike, keepingShane hydrated throughout his journey. Atthis stage, Shanes knee was becoming aconcern to the team as he was beginning

    to struggle. Shane went for physiotherapyonce again on his knee. His father Tim wasvery unfortunate having lost his brand newiPhone from his pocket while on route. Asearch party was sent out to try and locatethe phone. Unfortunately, we had no luck.

    Day 4 saw Shane running from Tullamore toBirr with his knee still giving him trouble.The road from Tullamore to Birr is particu-larly lonely as it has many long straightstretches. At the 5 miles stage, Shane hadgiven up running and was now walkingdue to the pain in his knee. He continued towalk for a further eight miles, arriving intothe village of Kilcormac at lunchtime inserious pain. This was Shanes toughest dayyet and Tim was seriously concerned as towhether or not to continue with thechallenge. As Kilcormac is a very smallvillage, we were worried there would be nophysiotherapist available for Shane.However, thanks to a local businessman, MrDoolan, who helped us to make contactwith a local lady called Sinead who had aphysiotherapy practice in Birr. Sineadagreed to come home to Kilcormac to seeShane. She worked on Shanes knee for 45minutes and at 2.30pm Shane set off againon the road to Birr still walking as his kneewas quite sore. About four miles out fromKilcormac, Shane started to jog again andjogged all the way into Birr. He reportedfeeling good and his knee had improved

    12 Marathons 12 Days

    Shane Finn with Julieanne Bell, his Cousin Mary Evans and Anna Shinnors.

    By Peter Landy,Fundraising

    Manager SBHI

  • www.sbhi.ie 7

    Marathon ManMarathon Man

    thanks to Sineads work. Shane returned tosee Sinead again that evening where shegave him another one hour session and toher credit refused to take any payment forher work that day.

    On day 5 Shane took off from Birr to avillage outside of Nenagh called Newtown.He proceeded through Borrisokane whereShane was joined on the second half of hisrun by his aunt Clare Finn. We stopped inNenagh town centre where a bucketcollection was taken up before proceedingto the finish point at Newtown. Five done,seven to go.

    Day 6 took Shane from Newtown, Co.Tipperary, to Sixmilebridge in Co. Clarepassing through Killaloe. It was a wet,showery Sunday morning as he took off inthe company of Jim Breen, a long-termfriend of Shanes who joined him for thisleg of the journey. As we passed throughBallina/Killaloe a large crowd had gatheredfor their annual pink ribbon day but ofcourse we had thought they were there tocheer Shane on. Again our team of helperstook up a bucket collection through thecrowd as we made our way toSixmilebridge. Shane was joined by a groupfrom the local athletics club on the last fivemiles of his journey.

    Day 7 took us from Sixmilesbridge to Adare,Co. Limerick. A local man from Sixmile-bridge called Billy Cronin and his friendaccompanied Shane into Limerick and outthe Dock Road. Here, Shane was then joinedby two girls from his running club in Dinglewho had travelled to meet him and runwith him to Adare.

    Day 8 saw Shane run from Adare toAbbeyfeale on a bright sunny morning. Onthis leg, Shane was joined by his best friendfrom Dingle who had travelled to meet him.At this stage, Shane was travelling very welland was beginning to enjoy the challenge.Todays problem was a puncture to Timsbike which was repaired by a Kerry man inAbbeyfeale called Mickey Reidy. Again, nocost was incurred for this service. KatieDunphy our educational officer interviewedShane for our website. Eight down, four togo.

    The 9th day of Shanes challenge saw himtravel from Abbyfeale to Killarney and thissaw Shane arriving into his native countyfor the first time since the challenge began.He posed for photos underneath thewelcome to Kerry sign on the main road. Itwas quite noticeable that as Shane got intohis own territory, he was running muchstronger and knew that the end was now insight. Again a group of friends from Dingle

    joined him on this leg of the run. This legfinished in the valley below Faranfore onthe Killarney road.

    On a beautiful summers morning Shanestarted his 10th marathon heading toCastlemaine. Shane was seen off by WeeshieFogarty, a well-respected radio presenter onRadio Kerry who interviewed Shane beforehe departed. First stop was Killarney townwhere Shane proceeded through the mainstreets, right though the town, headingtowards Killorglin. Shane was now on topform as he arrived at our pitstop in Killorglinwhere he spent time greeting and talking tothe locals. We left Killorglin throughMilltown to the finish line in Castlemaine.

    Day 11, the penultimate marathon sawShane travel from Castlemaine to CuraheenChurch outside of Tralee. There was newand real excitement within the team as weall knew Shane was going to see thischallenge through. We rolled into Tralee at3pm to a fanfare outside of GarveysSuperValu and Shane was greeted by theLord Mayor of Tralee and other local digni-taries. We left Tralee and completed the lastthree miles to Curaheen Church.

    Day 12 brought Shane on his marathonfrom Curaheen Church to Dingle. A hugecrowd had gathered at Curaheen on theSaturday morning. The crowd includedcyclists, runners and supporters to cheerShane home. We proceeded from there toCamp where we had our first pitstop of theday. We then continued to Shanes homeat Annacaul where he was greeted byfamily and neighbours. From there weproceeded to Annacaul village where thelocals had arranged a presentation of theTom Crean endurance medal to Shane. Wethen continued on to Lispole where againthe local community rallied to cheer Shaneon. The finish line was now in sight andShane along with his business partner,Mark Evans, ran the last leg together tofinish outside the WK Fitness premises inDingle, Co. Kerry. Here, a crowd of over athousand people had gathered towelcome Shane home.

    A total of 31,620 was raised by Shaneand his family during this event. Allassociated with Spina Bifida Hydro-cephalus Ireland wish to express ourheartfelt gratitude for their efforts. n

    Shane with young members

  • A Members StoryA Members Story

    8 www.sbhi.ie

    Catherines Storyby Catherine Campbell Mum to John aged 11 years with Spina Bifida

    Dromiskin, Co. Louth

    Our son John-Thomas was born on 18thFebruary 2003. John was a full-term babydelivered naturally (in the RotundaHospital) and weighed 3.3kg.

    He arrived at 3.45am and I was shown thelemon shaped lesion that was situated onhis lower back. By 9.30am John was inTemple Street Childrens Hospital with hisdad, Michael.

    It was the longest, loneliest day of my lifedespite me being surrounded by a myriadof medics who all told me to get some rest.

    Everyone (doctors, nurses, students, physio,social worker, paediatricians, counsellor)meant well but too many strangers in andout when all I wanted with me were notthere.

    Following Johns birth I remained in theRotunda for two more days. At 10.30pmthat same night I received a phone call froman anaesthetist who wanted my consent toadminister an anaesthetic to John in orderto carry out surgery on his spine andrepair/close the lesion. On discharge I wentdirectly over to John in Temple Street. Johnwas under the care of neurosurgeon, Mr.Prem Puri.

    Mr Puri and his team monitored fluid levelsin Johns brain and as they were rising itwas decided surgery to insert a shunt wasthe best way to proceed. The VP Shuntwould run from the base of the brain anddrain excess fluid via the stomach. Thissurgery was done on March 3rd when Johnwas two weeks old. We both accompaniedJohn to theatre and it was a most awfulfeeling handing over my new born baby. Icried helplessly.

    One week later, it was with great trepi-dation, and much anxiety and fear, we wereallowed to bring John home. It was a joyoustime also as I missed Anna (Johns two-year-old big sister) and was glad to get home tomy own bed, clean shower and decent food.

    For the first year of Johns life we werevisited regularly by a public health nurseand early intervention team (HSELouth/Meath) and we saw a physiotherapist,speech/language therapist, O.T. and nurse. Igot in contact with CRC (Central RemedialClinic) in Clontarf and paid many visitsthere. To this day John attends paediatrician,Sandra Egan. The CRC was my life-line inthe early years as I always knew if I had a

    query/issue they would do their utmost tohelp us as speedily as possible.

    As the years went by Johns rate of devel-opment pleased all the professionals and weat home continued to work with him andencouraged him to reach all his milestones. Iwont deny it is not a smooth road anddealing with health professionals is notsimple, although individual therapists andeveryone John attends are always working toimprove Johns quality of life and help him, aswe do, reach and attain his goals it is veryfrustrating to witness the manner in whichmonies were squandered and resources cutto the bare minimum in the disability sector,particularly in the good years when the so-called Celtic Tiger was running wild.

    It is shameful to see SNA hours being cut inschools and there are many, many moreexamples of how children with disabilitiesare being disadvantaged today. Parentsface constant battles to get basic require-ments /services for their children who arestill not seen as equals in our society.

    If we look back in time yes we can sayimprovements have come but there is amassive leap needed to enable our childrenaccess a whole raft of services, mostly in thehealth and educational sector when theyneed it, not when it is too late and an

    opportunity is missed. A child of any agewho has a disability requires a lot moretime. It may be just simple, daily tasks thatyou and I take for granted or it may be thatan hour each day is put aside for exercises,usually home-work will be slower and thereare many more examples. Meanwhile cuts insocial welfare benefits along with numerousnew/ extra taxes and levies we all pay leavemany families really struggling.

    There is huge financial pressure attached tohaving a child with a disability as in mostinstances one of the parents may have togive up working outside the home in orderto become a childs full-time carer or inmost cases reduce hours at the very least.

    Going on holidays and other trips awayrequires much more planning both in termsof accessability and funding as it may takelonger to ensure sufficient monies are thereto cover all costs. Planning one-to-oneactivities with siblings is crucial and not aseasy as it should be. Remembering tospend time away from the child with thedisability is very, very important and attimes it can be be overlooked or just toomuch effort, but they need you as well and,hard as it can be, sometimes we have to beable to ask for a dig out.

    Guilt is a wasted emotion. I know andpreach it on occasion but from time-to-timewaves of guilt wash over me when I think ofmy oldest girl and how the effect of havinga sibling with extra needs has impacted onher. I dont fret so much about Johnsyounger sister as she is a more robust, selfassured and capable, carefree child. So,definitely having a child with special needsdoes impact greatly on the family.

    Today, John is 11 years old and headinginto 6th class his final year in mainstreamprimary school. He wears specially madeorthotics or splints (John is cast for samein CRC and same are made and fitted onJohn in IDS Clinic, Cappagh Hospital).

    John mobilises with crutches but has awheelchair for longer distances. He also hasa younger sister Lily-Mae who is nearlyseven years old. John likes school andalways gives his very best. He finds thegoing tough but never wants to be seen ortreated differently. He loves football and likeany other 11-year-old dreams of becominga pro-footballer. Chelsea is his no.1 team!!!

    Early days for John

  • www.sbhi.ie 9

    A Members StoryA Members Story

    He gets on well socially with his peers, howeverplay dates to friends houses are not nearly on apar with either of his sisters. John has conti-nence issues and attends Mr. Fergal Quinn inCrumlin. He has an SNA at school who is nowworking a half day (three hours) due to cut-backs. Without her input and assistance, Johnsschooltime would undoubtedly be far morestressful. To date we have been very lucky thatJohn enjoys a good quality of life and his overallhealth is very good. It is a testament to theterrific hands of surgeon, Mr. Puri, that John hasnever required a shunt revision.

    In summing up, my hope for John is the same asfor my other two children that they will allgrow into happy, independent adults, who willgo on to third level education and achievewhatever career path they want to pursue. ForJohn, particulary as he is a sociable individual, Iwould like him to have one or two specialfriends/confidantes.

    I hope my childrens awareness and experiencesof disabilities and people who struggle on adaily basis will enhance those peoples lives. Ona more general level I would love to see thosepeople we elect into powerful positions withinGovernment put in place laws that will lead theway into a better, brighter future for all ourchildren where, finally, all children will becherished equally as is defined in ourConstitution but not put into practiceyet. n

    SAP employees who volunteered topaint the SBHI offices

    Cutting a dash John with his dad,

    Michael

  • SportSport

    10 www.sbhi.ie

    Wheelchair Rugby 7s by David GriffithWheelchair Rugby 7s is a relatively newsport. Most of us have seen theMurderball style rugby on TV, howeverrugby 7s is quite different. There arescrums, conversions, drop goals and line-outs, not to mention the bone crunchingtackles. There are seven players on ateam hence the name Rugby 7s. Eachplayer has their own role but it is verymuch a team effort.

    Last year the Irish team travelled to Francefor the Six Nations and managed to win theTriple Crown. Since then the team has gonefrom strength to strength. The addition ofhighly experienced coaching andmanagement staff has increased the qualityof training sessions along with promotingthe team.

    As it is a new sport, funding is extremelydifficult to get so fundraiser events havebeen our main source of funding for tripsand equipment.

    Due to the physicality of the game spokescommonly break and tyres puncture. Theteam recently competed in Liverpool at theFour Nations tournament where we were allsurprised at the amount of tyre and wheelchanges that had to be performed. Ideallywe needed a Formula 1 style pit crew onthe sideline. It was my first experienceplaying on the team internationally. I joinedthe team a year ago after the team won theTriple Crown. The team has a very eclecticbunch of players each bringing their ownattributes. There is a very supportive andpositive atmosphere on the team. We allsupport each other and pick each other up,sometimes literally.

    Our hope is to get a provincial leaguestarted and increase the profile of the gamein Ireland. We are always looking for newplayers to train with and play against. Thegame is open to everyone including able-bodied people. The team has hosted twocome-and-try / fundraiser days in the IrishWheelchair Association where friends andfamily could form teams, get in wheelchairsand try out the game for themselves. Anable-bodied rugby team visited and theywere all big, strong, fiercely competitiveplayers. At the end of the day they haddominated all the other teams. Theywanted to play the national team so we allwarmed up and got on court. From thewhistle we decided to go at them hard. Wehad kick-off and one of their players caught

    the ball. He looked up and saw two of ourplayers charging at him. All of a sudden thisbig rugby player quickly threw the ballaway and curled up in a ball at the thoughtof receiving the inevitable tackle. It washilarious. I think after the game they, andeveryone else, gained so much respect forthe team and disability sport in general.

    As a spectator sport it is an easy game tofollow particularly if you like able-bodiedrugby as the rules are very similar. We hopethe team and the game will grow bothnationally and internationally. To get moreinfo on the Irish Wheelchair Rugby 7s youcan find us on Facebook:https://www.facebook.com/WCRugby7sIRLor Twitter @ WCRugby7sIRL n

    David Griffith (front row, centre) with the Irish Wheelchair Rugby 7s.

  • www.sbhi.ie 11

    SportSport

    Double celebrations for Rush teen who isselected as Rush Golf Club's first everJunior Captain

    There were double celebrations for a youngRush teenager who was not only selectedas Rush Golf Club's first ever Junior Captionbut went on to win the Member & Childcompetition at the club on the same day.

    Sean Dunne (14) of Whitestown Road inRush, Co. Dublin, who was born with SpinaBifida Hydrocephalus, did not get the beststart in life after having 15 operations in 13years. However, he has defied a lot ofmedical science and started walking at ayoung age after numerous operations. Ascontact sports do not suit him, he decidedto take up golf four years ago and fell inlove with the sport.

    Rush Golf Club member Sean Caldwellselected Sean, the son of Alan and Anne-Marie, as his partner for the Member &Child competition which they went on towin. It is a remarkable thing for a childwho we were told when he was born would

    never walk and now here he is and playinggolf, said his proud mother, Anne-Marie.

    He started playing golf and seemed tograsp it so much so that he takes lessons,takes part in a Junior Golf Club during thesummer holidays and now he has beenselected as Rush Golf Club's Junior Captain.

    The St Joseph's Secondary School studentwas also invited by former Irish interna-tional soccer player Packie Bonner to takepart in the former Irish goalkeeper's AnnualGolf Classic for Spina Bifida HydrocephalusIreland at The K Club in August this year.

    Sean actually met Packie when he was fouryears old as Spina Bifida HydrocephalusIreland asked Sean to do a photo shootwith Packie for an Easter fundraiser, saidAnne-Marie, adding that Sean actuallycommented a few years ago: If Packiecould see me now playing golf.

    So Sean was delighted Packie invited himto play at The K Club and afterwards Packiegave a speech and included Sean in itsaying how everyone should have equal

    opportunities and that the game of golf hasnow given this to Sean, explained Anne-Marie.

    Sean was absolutely delighted whenDermot McNamara at Rush Golf Club, whois really involved in getting children to playgolf, was part of the committee whonominated Sean for Junior Captain, sheadded.

    An avid Liverpool supporter, Sean alsotakes part in DCU's CoderDojo, a computerclub for young people to learn computerprogramming and develop Apps where, atthe club's Coolest Project Awards, hereceived high praise for an app he is devel-oping to monitor fluid intake.

    Sean's condition certainly doesn't holdhim back. He takes everything in his strideand is a very laid back teenager, said Anne-Marie, adding that Sean never says no toany challenge but knows his limits. We areall very proud of him.

    Sincere thanks to Nicola Donnelly forpermitting us to use this piece.

    Sean Dunne with lady captain, Mary Comiskey, and Captain, Con Martin.

    Double Celebrations for Seanby Nicola Donnelly

    25 OCTOBER

    WORLD SPINA BIFIDA & HYDROCEPHALUS DAYThe World Spina Bifida and Hydrocephalus Day reminds the public and policy makers

    that Spina Bifida and Hydrocephalus are a reality and increases awareness about Spina Bifida and Hydrocephalus to improve the lives of people living with these conditions. This year we are asking all branches to get as much publicity either locally or nationally for SBHI.

    The selling of our Torc Pins, wristbands etc will not only generate funds but also help to raise awareness.

  • Positive Life Choices Positive Life Choices My Say, My WayMy Say, My Way

    12 www.sbhi.ie

    Friday 17th octobEr:

    9.00am5.30pm EU Workshop in conjunction with IF

    7.30pm-8.30pm Opening Ceremony

    Shane Finn / Meet & Greet

    8.30pmtil late Evening Entertainment:

    Organised by Youth Officers

    Saturday 18th octobEr:

    8.00am9.00am Breakfast: Mornington Restaurant

    8.30am9.30am Registration

    9.30am9.45am Conference Open

    Mr. Frank Larkin, Chairman SBHI

    Dr. Margo Whiteford, President IF

    9.45am11.15am Living with Spina Bifida / Hydrocephalus

    Shaymus Kennedy, James Bradley,

    Eamonn Cleere

    11.15am11.30am Morning break

    11.30am12.45pm Teaching & Learning for All

    Katie Dunphy, Education Officer SBHI

    Andrew Torrance, SENO, NCSE

    1.00pm2.00pm Lunch: Soup, Sandwiches & Wraps

    2.00pm2.45pm Nutritional Therapy

    Caroline Henry Room No. 1

    Behavioural Management

    Young People with Hydrocephalus

    Joan Curran Room No. 2

    2.45pm3.00pm Afternoon break

    Saturday 18th octobEr (contd):

    3.00pm3.45pm Peer Support Group Open Forum

    Facilitated by David Griffith

    Spina Bifida Hydrocephalus Only

    Room No. 1

    Typical Journey for a New Parent

    Dr. Margo Whiteford, Pediatrician

    Room No. 2

    3.45pm4.30pm OT Seating

    Facilitated by Dr. Rosemary Joan Gowran

    BSc (Hons) OT, MSc OT, PhD

    Lecturer Occupational Therapy

    Department of Clinical Therapies

    Faculty of Education and Health Science

    University of Limerick

    Room No. 1

    Incontinence and its Social Effects

    Edel Browne Curran, Family Support Worker

    Room No. 2

    6.00pm7.00pm Mass: A reflective and celebratory mass

    8.30pm12.00am Conference Close

    Dinner & Evening Entertainment

    Hosted by SBHI Board of Directors

    Music by The Uptown Band

    Andrea Fox: Childrens Fun Club

    Sunday 19th octobEr:

    8.00am10.00am Breakfast: Mornington Room

    10.15am10.45am Registration:

    AGM Voting Eligibility Registration

    11.00am1.00pm National AGM:

    Hosted by SBHI Board of Directors

    1.00pm2.00pm Lunch: Sunday Dinner

    Positive Life Choices My Say, My Wayagenda

    Programme subject to change. Early booking advisable.

  • Positive Life Choices Positive Life Choices My Say, My WayMy Say, My Way

    www.sbhi.ie 13

    Positive Life Choices My Say, My Waybiographies

    Shane Finn 22-year-old runner Shane Finn, completed his 12th marathon in 12 days toraise money for Spina Bifida Hydrocephalus Ireland. Shane finished the epicadventure in his hometown of Dingle 506kms from his starting point inDublins Phoenix Park on June 3.Shane is always looking to challenge himself and test his limits. "To be able toraise vitally needed funds for a great charity while doing so is a dream cometrue, he said.His 12 Marathons 12 Days challenge was inspired by his his first cousin, Mary,who suffers from the condition._______________________________________________________________

    Frank LarkinFrank, a member of the Donegal Branch, was elected as National Chairpersonof SBHI in October 2013. A well-known Letterkenny man, Frank has beenworking hard over the last 12 months in conjunction with his board tocontinue to carry out the important work of the organisation._______________________________________________________________

    Shaymus KennedyShaymus is the Vice President and Chief Information Officer InformationTechnology for Europe, Middle East and Africa with AIG Insurance. Prior tojoining AIG in 2012, Shaymus worked for Bank of America/Merrill Lynch, Capitaand Xilinx Corporations. He has an honours degree in History from UniversityCollege Dublin and a postgraduate Diploma in Management of ComputerSystems from Trinity College Dublin. Living in Naas, Shaymus is married with onedaughter. Outside of family and work his interests include supporting MunsterRugby, golf, wine tasting and military and Irish history. He previously held theworld record for the longest continuous after-dinner speech, at 42 hours, doneas a charity event._______________________________________________________________

    James Bradley Was born with Hydrocephalus in 1966. Schooling was very difficult and heleft school at 16 not having completed secondary school. He took up anopportunity to study in England in 1991 and gained A levels. He thendecided to do further study and undertook a degree in Tourism & Leisure.Upon returning to Ireland he undertook a MSc in Sustainable Development. _______________________________________________________________

    Eamon (Amos) CleereAmos would be considered as Ireland's most popular disabled DJ and overthe years he has made a lot of fans. In 2008 Improve Your Groove was estab-lished as a label for DJ Amos to promote his work further and luckily enoughit is still growing day by day._______________________________________________________________

    Kate Dunphy Educational Officer, SBHI. Kates main task is to increase knowledge andawareness in relation to the conditions Spina Bifida and Hydrocephalus byundertaking visits to preschools, schools, college/universities and to informand educate teachers and employers. _______________________________________________________________

    Edel Browne CurranEdel is the Manager of the Family Support team. She has a Bachelor of Arts(Hons) in Applied Social Studies in Social Care from St. Patrick's College inCarlow. She began working for SBHI in July 2004. Edel has a keen interest inimproving the quality of life of members through a person-centred approachas a result of the experience and knowledge gathered through working withSBHI.

    Caroline Henry, BSc (Hons), MSc, Dip NT, mIANTCaroline is a nutritional therapist based in Charlestown, Co. Mayo. Afterstudying for an honours science degree at NUI Maynooth, she continued to pursue her studies at the University of Ulster, Coleraine, where she graduated with a Masters degree in human nutrition. After graduating in February 2014, she decided to set up her own nutritional therapy business where she regularly sees clients and makes presentations.______________________________________________________________

    David GriffithDavid is a member of SBHI and has been involved with the Peer SupportGroup since its inception. David is also a member of staff of SBHI.______________________________________________________________

    Dr. Margo Whiteford Margo is a Scottish paediatrician and now works as a clinical geneticist. Shehas a great knowledge of all the medical problems associated with Spina Bifida and Hydrocephalus. Margo was born with Spina Bifida and has servedas Chair of the Scottish Spina Bifida organisation and is the current Presidentof the International Federation for Spina Bifida and Hydrocephalus.______________________________________________________________

    Joan CurranJoan has worked as a psychologist with the National Rehabilitation Board,with Enable Ireland, and with St Josephs (now known as Child Vision), aswell as spending a brief period in the National Educational PsychologicalService. Her work has been mainly with children who have disabilities andtheir parents, especially children who are blind or who have visual impair-ments, children who have physical disabilities, and children who havesensory, physical and intellectual disabilities all together.______________________________________________________________

    Andrew TorranceAndrew Torrance, Special Educational Needs Organiser (SENO).Working within NCSE for nine years, initially in Dublin, his current caseloadcovers schools in East Meath, Central Louth , Ardee and Dublin 7.He has experience of teaching in both mainstream schools and specialistprovision, at primary and secondary levels.Prior to moving to Ireland, he was Deputy Head Teacher of a large specialschool in North Lanarkshire, Scotland, catering for the range of needs ofchildren and young adults requiring additional support for learning.______________________________________________________________

    Dr. Rosie GowranRosie is a lecturer in Occupational Therapy (2003-present) at the Universityof Limerick. Prior to this she worked as a therapist, with experience in thepublic, private and voluntary sectors. Rosie has specific interests in occupa-tional empowerment, human rights and sustainable healthcare policy devel-opment, implementation and provision. In 2008 she was awarded a 3 yearHealth Research Board Therapy Fellowship and completed her doctoralstudies, Building a Sustainable Wheelchair and Seating ProvisionCommunity, Meeting Peoples Primary Needs Now and in the Future,utilising a soft systems approach. As an action academic Rosie promotes theuse of stakeholder-centred research which is connected to real world issues.She is committed to facilitating sustainable solutions involving communityof practice partnerships at a local, national and international level. In 2013Rosie was awarded Clinical Research Associate of the Year at the IrishMedical Times 12th Healthcare Awards as lead researcher on stakeholder-centred project to develop a support service strategy for people living withEB in Ireland.

  • EducationEducation

    14 www.sbhi.ie

    SCHOOL SESSIONS:The 2014 academic year has the potentialto be even busier for the EducationalOfficer with school visits planned in manyareas of the country. The educationalpresentations / sessions with school staffinclude emphasising the teaching andlearning implications of Spina Bifida and/orHydrocephalus as well as creating greaterawareness about the conditions SpinaBifida and/or Hydrocephalus. The teachershave found it useful to discuss teachingstrategies and ideas that would facilitatethe inclusion of children with the conditionin all aspects of the curriculum and schoollife. This year, following training, theEducational Officer has additional infor-mation in relation to Aistear (the new earlychildhood curriculum framework forchildren from birth to six years in Ireland)for preschools, junior and senior infants.This incorporates a learning through playmethodology. If you would like theEducational Officer to visit a preschool,school or college/university in your regionplease do not hesitate in contacting herusing the details provided under Katiesphoto on this page. In addition to schoolvisits the Educational Officer will berunning awareness sessions in EducationalCentres in many areas of the country.

    SBHI PEER SUPPORT:The Peer Support programme was firsthighlighted at the 2013 SBHI Conferenceand AGM in Sligo. Since then SBHI PeerSupport has been going from strength tostrength. We have a number of volunteerstrained in becoming a peer supporter andthe phone line was made live in 2014. Like a

    lot of programmes starting off it was slow tobegin with but has slowly been gatheringmomentum and with great delight I can saythat a number of members have availed ofSBHI Peer Support and benefitted from it.The key to peer support is that is is alistening service for members, by membersof the association.

    This year we have a few sideline projects inthe pipeline. These will be launched soonso watch this space (or at least watch thewebsite, www.sbhi.ie)

    WEBSITE REDEVELOPMENT:The website redevelopment was quite achallenge in the end with the sheervolume of information to be relocated tothe new website and updated where

    necessary and appropriate. SBHI has beenextremely grateful for all of the help andsupport provided by SAP. I have met withmany of the staff on multiple occasionsand have to commend them on theirprofessionalism, especially as many of thestaff who have worked on the websitehave done so as part of their voluntaryhours or in their own personal spare time!!

    Dont forget also that this is YOUR websiteso if there is something you want to sharewith others please do not hesitate incontacting the Educational Officer.

    DISABILITY AWARENESS ANDPRESENTATION SKILLS COURSE:This is a new course that will be set up invarious branch areas around the countryfor interested members. This training willinvolve working together as a group tocreate the ideal presentation to deliver toschools and/or colleges to create greaterawareness about Spina Bifida,Hydrocephalus and Folic Acid. This trainingwill also involve individuals working ontheir presentation skills in order to be ableto deliver the training in your own localareas. This training will ideally take placeover a weekend or three mid-weekevenings. This is a great opportunity formembers (individuals with Spina Bifidaand/or Hydrocephalus, parents, carers orfamily members) to work on their ownpersonal development and gain confi-dence in speaking in front of a group. Thistraining will be undertaken in various areasBUT it will depend on interest frommembers. So if you are interested pleasecontact the Educational Officer using thedetails provided on this page. n

    Educational Officer Update

    Katie Dunphy, Educational Officer

    Spina Bifida Hydrocephalus Ireland

    Phone: 087 3792051

    Email: [email protected]

    Results of National Research Project:Investigating the Health and Therapy Needs of Children with Spina Bifida in Ireland

    Sarah Governey, Eimear Culligan, Jane LeonardTemple Street Childrens University Hospital

    Further details on www.chu.ie

  • NewsNews

    www.sbhi.ie 15

    Financial Wellbeing Solution

    A Special Needs Bank Account allows bothparents to legally manage the account onbehalf of their child. Having full access to theaccount the parents can make decisions ontheir own or jointly with their child,depending on his/her ability to manage theirown financial affairs.

    In to this account you should direct your childsDomiciliary Care Allowance or DisabilityAllowance. I recommend keeping all otherentitlements out of the account such as CarersAllowance, Respite Care Grant and havingthose payments put in to the parents personalbank accounts.

    From the Special Needs Bank Account youshould pay for your childs medical needs suchas any private therapies, equipment, healthinsurance, hospital, doctor and consultant visits.You should also use this account to pay for yourchilds personal needs such as phone, hobbies,clothes, entertainment and eating out.

    Keep your bank statements and do not shredthem at any stage. The statements will beused when applying for entitlements and willshow proof of the financial position of yourchild.

    To open the account

    A parent needs to complete the appli-cation form on behalf of their child withspecial needs and produce two forms ofidentification (passport, drivers licence,proof of address, etc). The applicationform also needs to be signed by yourchilds doctor or a doctors certificate canalso be attached to provide evidence oftheir disability.

    When opening the account you shouldalso request a laser card, cheque book,standing order forms and direct debitfacilities. You must also ask for DIRTexemption to be applied to the account.This will prevent the government taking41% as a tax on any interest achieved onthe account.

    Contact your local bank and they canguide you through the process. If you areone of the many families that alreadyhave a Financial Wellbeing Trust Planthen I will be personally contacting yousoon to supply you with the specificforms and to guide you through theprocess.

    Dolores, Financial Wellbeing Services.

    A question I have been asked so manytimes: Is there a Special Needs BankAccount? The answer is, YES there is.

    Most parents find it very complicated toopen, operate and manage a bank accountfor someone with special needs and parentseventually run in to numerous issues.

    Ive had families tell me shocking storiessuch as one family where their son who hasan intellectual disability had his bankaccount cleaned out and his parents wereunaware. Banks have also refused to openup accounts for many of my families as theystate that the person with special needsdoes not understand the terms and condi-tions. I ask who does!

    When speaking to parents I find most haveopened joint accounts with their childrenbut this is only a temporary fix and will causeissues when the parent passes away as thisaccount will have to be frozen and goesback in to the Estate.

    An even bigger issue is when theDepartment of Social Protection is carryingout a means-tested assessment then allmoney in a joint bank account can beallocated to either party.

    Special Needs Bank Account

    Me and My Backbone: My Journey with Spina Bifida is due to be published by BookHub Publishing in November. Book Launch 7th November, 2014, venue: Clare CountyCouncil HQ at 6pm.

    My main goal in writing my story is to show that there is always a positive side toevery challenging situation. There is always a bright side to life and my motto is,Keep Smiling Always. Its been a crazy journey for me since I was brought into theworld but I have chosen not to take life too seriously and so I try to live my life with abit of humour, no matter what the world throws at me. Each developmental stage inlife brings its own challenges. I want to show that even though I have Spina Bifida Igot myself out of a dark place and am living a happy and normal (whatever that is!)life.

    It was a dream of mine for many years to tell my own story. Now, as a young twenty-eight-year-old woman, I hope that my story gives strength and courage to youngparents faced with similar challenges as mine faced, and to those with Spina Bifidathemselves.

    Indeed, how we respond to challenges makes us who we are. My message toreaders is: We must never underestimate human potential.

    Me and My Backbone: My Journey with Spina Bifida is due to be published byBook Hub Publishing in November. Book Launch 7th November, 2014. Venue: Clare County Council HQ at 6pm.

    Facebook page: www.facebook.com/pages/Siobhn-Mungovan-Author/281132122082703 n

    Me and My Backbone

  • 16 www.sbhi.ie

    Peer SupportPeer Support

  • NewsNews

    www.sbhi.ie 17

    reports which will be available) the existingproblems to the National HealthAuthorities and engage in a dialogue.EURORDIS does not have the resources torespond to individual cases; they will notcommunicate the results directly to you, butyou will be able to read the outcomes of thiscampaign on the EURORDIS website.

    Founded in 1997, the European Organisationfor Rare Diseases (EURORDIS) is a non-govern-mental, patient-driven, alliance of organisa-tions and individuals active in the field of rarediseases in Europe. EURORDIS represents over600 rare disease patient organisations in morethan 50 countries, covering more than 4,000rare diseases.

    For more information: www.eurordis.org n

    To improve access to care, EURORDISneeds your cooperation!

    23 July 2014, in line with this year's theme of

    Care, EURORDIS HAS LAUNCHED ASURVEY to gather information about thedifficulties people with rare diseases and

    conditions face with regard to accessing

    their treatment. They invite you to share

    your experiences, which they will use in their

    advocacy work and lobbying at national

    level. Are personal payments creating

    financial difficulties? Are there long waiting

    lists? Is the type of treatment or care you

    need not available close to where you live?

    What is the impact on your health, on your

    quality of life? Please take the time to fill out

    Are you facing difficultiesaccessing your treatment ?Please report them to EURORDIS

    the EURORDIS questionnaire. It is availablein 19 European languages.

    The collected data will be processed by

    trained staff in order to point out (via the

    Members and volunteers enjoying a day out

    SHINE 2014

  • SHINESHINE

    18 www.sbhi.ie

    SHINE 2014

    The city is in safe hands

    Captive audience

    Hey horse!!!!

    Sorting out the creases

    Nothing biting

    The entertainer

  • Around the CountryAround the Country

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    Around the Country

    together and have fun, but also to discussdifferent struggles that people may beexperiencing.

    The Connaught Hotel where we stayed is a

    beautiful hotel which is situated just

    outside Galway city, it is fully wheelchair

    accessible and the staff could not do

    enough for us.

    MAYO/ROSCOMMON/LEITRIM/SLIGO/GALWAY/DONEGAL

    Cookery Class Sligo.

    SUCCESS IN THE KITCHEN

    We started our three-week cookery courseearlier in the year which our membersfrom the Sligo area attended. Evelyn, aqualified cookery teacher, ran the course inthe community hall in Sligo, where shesupported the members to learn how tocook.

    On average 4/5 members attended thecourse and they all said they loved it. Eachnight the members had to cook andprepare their food with some support fromEvelyn.

    The members gave suggestions for whatthey would like to cook the followingweek, however you cant get too adven-turous with only two hours. They had alove-themed night on February the 12thto mark Valentines Day, with heart-shaped cookies, and beautifullydecorated plates. These classes aresomething that we would like to runagain in the future.

    SUMMER SOCIAL IN SLIGO

    Some members from Sligo arranged aSocial Weekend in Galway. The weekendkicked off on Friday afternoon when wetravelled to The Connaught Hotel where,on arrival, we chilled out for a couple ofhours.

    That evening we had a lovely three-coursemeal in the hotel restaurant which had awonderful atmosphere as everyoneenjoyed watching the World Cup.Following dinner we enjoyed a lively musicsession in the bar.

    Next day we hit the shops in Galway city.We all attended the Greyhound Track inGalway and enjoyed dinner and a bit of aflutter on the dogs. It was a lovelysummers evening and we retired back tothe hotel and enjoyed some of the enter-tainment.

    The following morning we had a lovelybreakfast and said our goodbyes. Thisweekend was a lovely opportunity to get

    A night at the dogs Galway.

  • Around the CountryAround the Country

    20 www.sbhi.ie

    The TitanicExperience

    A night at the dogs Galway.

    The Dublin Branch have had a busytime organising a Charity Golf Daywhich was hosted by Dun LaoghaireGolf Club in June. It was a magnificentday with almost 200 golfers playing,followed by a BBQ in the sunshine.Great generosity was shown by all andthe Branch raised over 11,000!

    We are also continuing with churchgateand shopping centre bucket collectionswhich are a struggle as we need morevolunteers, please contact Vickie in theoffice if you can help. Contact your localchurch and see if they'll allow you collectafter mass one weekend (if you arepermitted to collect inside the gate you

    do not need a Garda permit). Let us knowand we'll help out.

    During the summer, twenty-nine Dublinmembers attended SHINE camps and twowent on the Away Week. Many membersalso helped as volunteers. The campswere very well run again this year andeveryone had a fantastic time.

    Our Drinks Night (last Saturday eachmonth in the Red Cow) is becoming moreand more popular. The monthly lunchouting (second Saturday each month in acity centre hotel) is also back after thesummer. If you have not come to either ofthese social outings in the past we would

    urge you to come as it's great to gettogether and both are very informal andrelaxed. We can arrange transport formost of those attending.

    The "Clonshaugh Crew" club forteenagers (aged 12 upwards) is back upand running. The club is great fun,featuring sport with Brian and computerprojects with Aisling.

    We're planning an "interactive nutritionworkshop" before Christmas and a make-up/colours evening.

    Contact Vickie in the Dublin Branch office01 8485227 for more information andJOIN IN! n

    DUBLIN

    SKINCARE PRESENTATION DAY A Skincare Presentation Day was held inDonegal in the Bluestack Foundation,where we heard about the importance ofmaintaining skin integrity. This turned outto be a very informative day wheremembers learned a lot about the impor-tance of skin preservation and how toprevent pressure sores and wounds, theyalso got an opportunity to ask lots ofquestions. The handout had lots of usefulinformation.

    This information is very important toanyone who is likely to get a pressure sore,and unfortunately a lot of people who havelimited mobility or use supports to supporttheir mobility are at a higher risk of devel-oping one. If you would like a copy of thishandout please contact me.

    TITANIC EXPERIENCE

    Sligo and Donegal/Letterkenny membersattended a day trip to the TitanicExperience in Belfast. We all met up in theCaf in the Titanic building, where weenjoyed a lovely lunch.

    Following lunch we had a semi-guided touraround the Titanic experience. Theyexplained everything about the Titanic. Wealso got an elevated rollercoaster ridearound some of the experience called theshipyard ride. This is an electronic dark ridethat uses special effects, animations andfull-scale reconstructions to recreate thereality of shipbuilding in the early 1900s.This was both fun and educational.

    We had a lovely time and the experiencewas enjoyed by children, our adultmembers and parents.

    Aine Harrington

  • Around the CountryAround the Country

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    LOUTH - MEATHINDEPENDENT STRIDES

    The Independence is an adaptive saddlewith adjustable and removable headrest,backrest, forearm supports, hand grips,Peacock Irons, and a safety release system.This therapeutic saddle features a promptreduction technology that gradually allowsmore independent sitting on horseback byriders with special needs.

    Adapting and supporting according to theneeds of each individual, TheIndependence saddle and its promptsallow a person with severe physicalchallenges to sit safely and independentlyastride a horse, while the traditionalphysical dependency on sidewalkers isdramatically decreased.

    The Independence saddle offers bothsafety and versatility, and is adaptableenough to accommodate riders of varyingsizes, disabilities and/or injuries. Once therider's needs are evaluated, prompts will bedetermined and provided as needed. Headand back supports provide head and trunkcontrol. Adjustable forearm supportsstabilise the arm and shoulder girdle,allowing the rider to lean slightly forwardinto a functional sitting position. Hipsupports stabilise the pelvic girdle. As therider gains strength, and goals areachieved, prompts may be removed.

    The special needs saddle gives a sense ofaccomplishment. As a Class 1 medicaldevice, it provides physical, occupational,and psychological therapeutic opportu-nities. The Independence saddle offerseach rider an immeasurable sense ofsuccess and self-fulfilment, maximising hisor her quality of life.

    http://www.independentstrides.com/ n

    Shane and Ryan, members of the Louth Meath Branch, enjoying the Independence saddles

    KILDARE

    TeresaConroy withlast yearswinner,JamesKavanagh,presentingAlan Murphywith the JohnPaul ConroyClub 2000Person of theYear replicashield.

  • Around the CountryAround the Country

    22 www.sbhi.ie

    Annie enjoying the Easter day out

    SOUTH EASTHi everyone, as most of you know JudyLong has finished up as the Family SupportWorker in the South East. My name is JaneMullane and I have taken over the position.I am delighted to have been given theopportunity to work with Spina BifidaHydrocephalus Ireland and I look forwardto meeting everyone in the upcomingmonths. Over the next while I intend to getin contact with as many members andtheir families as I can to arrange homevisits, clinics, social outings, and/or infor-mation seminars that would be useful toour members and families.

    I understand that there are counties that

    Jane Mullane

    do not receive as much contact as othersand also that there are areas that do nothave branches set up. I would like to set upsome more support in these areas over thecoming months. This will only be possible iffeedback is provided from the membersand their families within these areas. Mymain base will be in Wexford town and youcan contact me on 087-6527175 [email protected] should you need to.

    Looking forward to seeing you again at theAGM. If you need anything else, just get intouch.

    Kindest Regards,Jane Mullane.

    Saoirse Nolan at pony riding

    The Wexford gang at pony riding

  • Around the CountryAround the Country

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    Alex Hatton enjoying pony riding Aoife Flood at pony riding

    The Flood family having a race in Kia Ora Mini Farm The Kinsella family enjoying Easter crafts

    The Wexford group on their Easter day out

  • OrthopaedicsOrthopaedics

    20 www.sbhi.ie

    Spina Bifida Hydrocephalus Ireland - Providing orthopaedic footwear andassociated orthotic appliances for over 20 years

    ABOUT US

    The SBHI Orthopaedic FootwearCentre was established in the mid1980s. Its initial purpose was to providean efficient service to its members inacquiring suitable orthopaedicfootwear and appliances. It subse-quently expanded its services toinclude all aspects of orthopaedicfootwear, including specialist shoesdesigned for diabetics.

    SERVICESThe main services provided at theCentre are: All aspects of orthopaedic footwear

    and orthotic devices An extensive range of fashionable,

    orthopaedic shoes for children Orthotic supports for sports injuries A full repair service.The footwear can be made to measure,or quality off-the-shelf footwear can betailored to meet specific requirements.The centre offers a wide variety ofstyles to suit every occasion and for allages. All work is carried out by fullyqualified Orthopaedic Technicians.

    COMFORT AND STYLEThe SBHI Orthopaedic Footwear Centresupplies a range of footwear and appli-ances that have all the requiredorthopaedic features for a perfect fit;the footwear also retains a largeelement of style which is so importantto all our clients.

    SELF-CARE OF FEET1) Check for any breakdowns (i.e.

    pressure sores, ulcers, blisters)

    particularly under the toes and thebase of the feet at least once ortwice a week.Hint: use a mirror if needed toinspect the feet. Possibly check yourfeet after showering. What you should look for wheninspecting your feet: Any redness and change of

    colour Swelling that is not usually

    present Any break in skin, especially on

    the soles of the feet Any accumulation of hard skin

    on the soles of the feet Any other problems which may

    occur2) Be very careful of banging or

    knocking feet when transferring.3) Make sure you have supportive

    fitting shoes in order to preventfriction sores or blistering.

    4) After showering ensure that yourfeet are dried properly (particularlybetween your toes).

    ENTITLEMENTSPeople who are covered under theMedical Card/Long Term IllnessScheme may be entitled to servicesfree of charge on condition that theymeet the requirements of the HSE. TheCentre offers advice on these entitle-ments, in a sympathetic, efficient andfriendly manner.First-time clients availing of ourservices under the Medical/Long TermIllness Card must have a referral letterfrom a Physiotherapist, OrthopaedicSurgeon or Occupational Therapist.Repeat clients must have a referral

    from a Doctor or Physiotherapist/Occupational Therapist. Private clientsdo not need a referral.

    CLINICSRegular clinics are held at the followinglocations: SBHI National

    Resource Centre,Clondalkin, Dublin 22

    St. Michael'sHousesthroughoutDublin

    CheeverstownHouse,Templeogue,Dublin 6w.

    A fully-trainedOrthotist is in attendance atall clinics to ensure accurate fittingsand mouldings.Private clinics can also be catered for.To make an appointment get in touchwith us via our contact details below.

    CONTACT US:

    ORTHOPAEDIC FOOTWEAR CENTRE on 01 457 2326.

    CEO: George Kennedy, [email protected], 087 915 7613.

    Manager: Lorna Whelan,[email protected], 086 851 7518.

    Administrator: Karen Malone,[email protected], 01 457 2326

    CONTACT US:OrthopaedicFootwearCentre

    Telephone:01-4572326