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Preparations are well underway for this years extravaganza! We
would like to thank everyone at Alder Hey for all their
co-operation in organising the conference, particularly Mary and
Gill, the cardiac liaison nurses and Dr Peart who have really
pulled some strings to get us the preferential rates and help we
need so that we can offer this event.
The day will start with a cup of tea and a bacon sandwich (we
thought you might like one if you?ve been travelling!)
There will be a good quality raffle with loads of goodies, and
there will be an opportunity to talk with the speakers and meet up
with other families during the two hour lunch which we hope you
will enjoy!
We will be writing to Santa and we are very optimistic that one
of his representatives will visit us and, in the time honoured
tradition, give presents to all the children who have behaved
themselves this year!
Crèche facilities are available but numbers are limited for the
under four year olds and so places will be given strictly on a
first come first served basis.
We will be running a sib-shop for older children to explore
issues that they encounter because they have a family member with
the condition. We have taken advice from Don Meyer in Seattle on
the format for this.
Confidential benefits advice clinics will also be available on
an individual basis.
We have a pretty good line up of speakers for you:
Donna MacDonald McGinn from the Children?s Hospital of
Philadelphia will open and give a history of the 22q deletion.
She will be followed by Dr Liz Sweeney, Clinical Geneticist at
Alder Hey. Who will explain all about the FISH test and what it can
(and can?t) diagnose.
Dr Paul Millar, Consultant Paediatric Cardiologist from
Birmingham Children?s Hospital will give a talk on how heart
defects
develop during pregnancy . (To be confirmed.)
Alison Jeremy, Specialist Speech and Language Therapist from
Birmingham Chil-dren?s Hospital will tell us about VPI after
surgery and what to do if you?ve got it!
We also have Dr Kumararatne, Consultant Immunologist from
Addenbrooke?s Hospital in Cambridge, he will try to iron-out some
of the worry about day to day issues with infections and a
work-shop for that all important vaccine advice!
We will also have DR Mark Dalzell and Miss Francesca Anan,
Consultant Gastroenterologist and Dietician from Alder Hey who will
give advice on how to deal with feeding issues.
Ahamad Al-Khattat will be available for individual consultations
on leg pains.
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The Newsletter of Max Appeal!The Newsletter of Max Appeal!
Dear George… … … .Dear George… … … .
Issu
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002 Design a Christmas Card competition!!
Max Appeal Christmas cards have proven to be very successful and
so we will have a range of cards available
to purchase at £3.50 for a pack of 10 plus postage.We will, of
course have the popular bear designs along with a selection of
children’s designs… … order yours now!
Send us your design and you could well be dragging Mum or Dad
down to WHSmith to spend your £10 voucher! The closing date is
Saturday 26th October our address is on the back page… . So get
those pencils sharpened!!
There is no charge for the conference so please sell as many
raffle tickets as you can as this will help
fund the day,
thank you!
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VCFSEF Conference Northampton,
26th~28th July 2002The conference was well attended and had a
very good
line-up of speakers. Day one focused on Speech and Language.
There
were speakers from both sides of the Atlantic and differ-ences
of approach were discussed by members of the
panel and the audience Day two looked at psychological and
psychiatric issues
along with immunity and leg pains. There were fascinating talks
on brain anomalies and behavioural patterns in addition to types of
psychoses noted.
Day three looked at feeding and educational issues.
We have a copy of the tapes available for members to borrow and
further notes including contact details for
Celebrating Families Week at Sunfield PDC in Clent, WorcsHosted
by Barry Carpenter, Chief Executive of Sunfield
and Don Meyer Director of the Sibling Support Project,
Seattle
Uncommon Fathers— Gary Hawkesford attended the day and
approached it with an open mind as he did not know what to expect.
The day consisted of a cou-ple of workshops that focused on
differing needs of a father compared with a mother. In particular
Dad's tend to be the one's who are going out to work and have more
difficulty in attending appointments with their child. Therefore,
the workshops addressed the fact that for Dad's, it sometimes feels
harder to keep abreast of the intricate facts pertaining to their
child. A downside of the day was that most of the fathers who
attended had children who where teenagers so they were not facing
the same issues that Gary is facing today (his daughter is three
years old) but they have been through them and could share
experiences. Likewise with Mary and Stan, there were no other
fathers present who had experience of 22q11.2 deletion.Family
Matters (a day for grandparents) Mary and Stan Hawkesford attended
the day and left feeling exhausted but at the same time very
positive!The day was a series of workshops and discussion forums
focusing on how the extended family copes with the news of a
disability within the family. In particular, issues such as how
grandparents - in their role as parents - cope with supporting
their own sons/daughters (and their relevant partners). In addition
they are dealing with the trauma of what is happening to their
grandchild. Some of the sessions also addressed issues such as
coming to terms with the long term prospect of having a grandchild
with special needs and how the family adjusts. Above anything else
it was great to meet with other grandparents and share experiences.
The one downside was that there was nobody else within the group
with experiences of 22q11.2 deletion. Mary and Stan (Nan and
Grandad to Amie Hawkesford) would be delighted to take calls from
other grandparents - maybe just to talk or with the possibility of
meeting for informal get togethers. Please contact Max Appeal if
you would like to be put in touch with them.Celebrating families— a
day for professionals working with families of children with
disabilities. Initial thoughts from Don Meyer centred around
“family ser-vices” and how very often that just means mum and one
child, very often there is no provision for siblings, fathers and
significant others. The merits of fathers groups was explored.
Barry Carpenter’s talk was entitled “as distant as the moon” . In a
survey parents were asked what they wanted from services and one
parent said “to live like a normal family”. Discussion focused on
making services for families more accessible. Other areas explored
included tackling sensitive issues such as sexual relationships for
children with a disability.
Left Heart Matters Open DayJulie was able to attend the meeting
and Left Heart Matters were generous enough to allow Max Appeal to
have stand and provide families with information. This was helpful
as very occasionally a child will have hypoplastic left heart
syndrome as a feature of their DiGeorge syndrome/ 22q11.2
deletion.
The location for the day was the rather understated grandeur of
Bosworth Hall! The talks were highly informative and people were
particularly appreciative of Dr Oliver Stumper’s talk on the
modified Norwood procedure that is now being implemented at
Birmingham Children’s Hospital following trials around the world.
This is an exciting development and may well lead to lower
mortality rates for children with this very severe heart defect. If
you would like more information on this then please contact Left
Heart Matters through www.lhm.org.uk or phone 0121 455 8982.
Julie Wootton of Max Appeal Bosworth Hall
Brooke McLeanThe star of the crèche at last years AGM steals the
show at a wedding!! Brooke’s Grandma, Pat, reports that eye witness
accounts indicate that Y fronts were present under the tartan!! She
also said that “Brandon (little brother, below) was banned from
Registry office as he poohed his pants - funny how weddings have
that reaction on some men!”
The cool dude in the shades is Brooke, Kira and Brandon’s proud
Dad, Russell, and best-man to the other one in the skirt, Hugh.
“Needless to say Brooke
was a proper little star it was lovely to see her enjoying
herself so much and the disco lights were a huge hit with her
needless to say!. They may be on the Christmas list as Grandad
thinks it would be a good idea for her to have her own disco lights
in her bedroom!! (maybe a spinning silver ball and he can get his
white suit out and boogie on down with her to Saturday Night fever!
“
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Ask your doctor if tablets can be given instead of medicine
(when your child is able to digest them) and/or ask for sugar-free
medicines wherever possible. (NB. Some medicines
like Lactulose do not have alternatives but may a very high
sugar content).
Get your child registered with a dentist as soon as you can.
Have regular checks. At your dental visits the dentist may decide
your child needs a fluoride supplement to help strengthen the
enamel of the teeth.
Your dentist may also suggest fissure sealants. This is a
plastic coating, which the dentist can paint into the fissures or
biting surfaces of permanent molar teeth.
Dental care may be conducted for your child at the hospital
caring for them. However, the social implications of visiting the
family dentist should be recognised and visits to your family
dentist should be continued wherever possible. In all cases, visits
should be planned from an early age (one year old).
If any dental work is to be carried out antibiotic cover may
need to be given one hour beforehand –please check with your
Paediatrician, Cardiac Liaison Nurse or Cardiologist if you are
unsure if your child will need this.
Further Information
An Oral Healthcare Facilitation Unit has been set up at The
Freeman Hospital in Newcastle. They are able to offer advice to
anybody who has questions regarding dental problems and oral
hygiene. Their contact details are:
Geraldine Haddow, Oral Health Facilitator, Oral Healthcare Unit,
Freeman Hospital, High Heaton, Newcastle upon Tyne, NE7 7DNTel:
0191 284 3111 or e-mail:[email protected]
If you are having problems registering with a local family
dentist, The British Society of Paediatric Dentistry will be able
to help. There are 13 local branches in the UK. To find your local
branch contact the National secretary:
Stephen A Fayle; Department of Paediatric Dentistry, Leeds
Dental Institute, Clarendon Way, Leeds, LS2 9LUTel: 0113 233 6194
or E-Mail: [email protected]
This information was prepared by Sam Hawkesford (written with
endorsement from Dr. Lowry, Consultant in Paediatric Dentistry,
Oral Healthcare Unit at The Freeman Hospital in Newcastle)
Children affected with a 22q11.2 deletion may display certain
dental characteristics such as higher number of cavities or poor
quality teeth, which may decay quickly. Gastric reflux can
contribute to the deterioration of the teeth.
There are 2 main diseases, which are preventable: Gum Disease
and Tooth Decay. By preventing these diseases needless suffering
and threat to general health is avoided.
Children with a 22q11.2 deletion can be more prone to disease
because of: Poor quality teeth that may decay more easily;
Difficulty with feeding - i.e. eating smaller amounts but more
frequently; Gastric reflux.
Many children with the deletion also require medication and/or
calorie supplements and some of these have a high sugar content.
This magnifies the need for dental care to protect the teeth and
encourage good long-term oral hygiene habits.
For children with heart defects, decayed teeth or inflamed gums
also increases the risk of getting a disease of the heart called
“infective endocarditis” which is an infection of the inner lining
of the heart.
Useful tips for Good Oral Hygiene practice:
Start with toothbrushing as soon as teeth appear. Regular
toothbrushing after mealtimes, after administering medicines and at
bedtime are the most important times. Teeth should be brushed using
a child?s toothpaste containing fluoride.
Diet – If sugar is taken into the mouth often during the day,
then dental Decay will occur. If possible. Keep sugary foods to
mealtimes. There are a lot of hidden sugars in the food that we
eat. Suitable snack foods include: fruit, cracker biscuits, cheese
and yoghurt.
Drinking sugary fizzy drinks will cause both decay and loss of
enamel. Suitable drinks are: unsweetened and non fizzy drinks,
milk, water, low calories or artificially sweetened squash, pure
fruit juice diluted half and half with water.
Oral CareOral Care
MEDICAL MATTERS
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She started speech therapy and had lots of hearing tests when
she was four.
It was found that she had conductive hearing loss and expressive
language delay. She was also suffering with many ear infections and
it was decided to give her grommets to help this.
This procedure was carried out twice and has left her eardrums
perforated but it seemed to help.
Sophie was born on 1st July 1992, our third child after Emma,
now 14 and Adam now 12.
The birth wasstraightforward and everything seemed fine until
she tried to feed
The milk that she was drinking was mostly coming out of her
nose; it was then that the doctors discovered a mid-line cleft in
her soft palate.
We had to feed her milk from a beaker which was somewhat
challenging.
Sophie had a febrile convulsion after the first of her Hib
vaccines. Nothing was ever confirmed to us that this was the cause
but it was hinted at and after recently reading her medical notes
we are convinced that this was the cause.At 10 months old Sophie
went in to hospital to have surgery to repair her palate which went
well.
She had to have splints on both arms to stop her putting things
into her mouth as babies do, so that she did not disturb the
stitches, but at least now the milk she was drinking was going down
rather than coming out.
At about 18 months old we noticed a lump about the size of a
marble above Sophie?s belly button. This turned out to be an
Epigas-tric Hernia.
Sophie was having problems going to the loo, constipation etc,
and it was decided that while she was having the hernia repaired
that they would perform an anal stretch to try to ease the pain and
worry of going to the toilet.
We had also noticed by this time her prominent ears, rounded
nose, her head always seemed to be on one side and her speech was
delayed although we wouldn?t admit it to each other and certainly
not anyone else, especially the doctors.
We started to become very protective of her and didn?t really
face the fact that there could be an underlying reason forher
problems so far.
Aged 18 months
Aged 3 or 4
Age 5
Spring 1997paler than usual
First day at school
Age 3 yearsAged 8 months
Aged 21/2: with hernia
aged 3 months
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By 1997 her speech therapist was reporting enormous improvements
but was concerned about her over-all progress and suggested that
she would have long-term educational needs.
By March 1999 Sophie?s last set of grommets had fallen out and
it was suggested that she should have a bone-anchored hearing
aid.
This would involve a titanium stud being screwed in to her skull
and a hearing aid clipped onto it, the sound being conducted
through the bone in to her ear.
After Sophie was diagnosed with VCFS she had her heart checked
and it was found that she had a hole in her heart (ASD).
Age 5 years
She was six then and it was decided to leave it if possible
until she was nine.
By this time the hole had got slightly larger and we had to go
to Southampton General Hospital Children?s Cardiac Unit (Brilliant)
for her to have an ADD closure through a cardiac catheter.
This involved inserting a tube in to an artery in Sophie?s groin
and up in to her heart through which a titanium nickel device is
passed and used to close the hole.
This so far has been a success and she is left with a tiny scar
about half a centimetre at the top of each leg.
2002: Sophie has always attended mainstream school and is doing
quite well considering her slow start.
She has many friends and takes part in most things. She loves,
and is very good at, horse riding and has her own horses Megan and
Barney.
She never stops smiling and is always very kind and helpful even
if she does drive us mad sometimes with her perseverative
behaviour.
We are waiting to hear from the ENT department at Derriford
Hospital, Plymouth, who are going to correct her prominent but cute
ears at the same time as removing her tonsils.
Who knows what the future holds for Sophie, there have been
tough times in the past and maybe they are not over but she is such
a loving and giving child we wouldn?t have her any other way.
By Phil and Sarah Cardew
Age 5 years
Looking cheekyAged 6
Earrings and new haircutAged 6
In the woodsAged 7
Steering the boatAge 9
May 2002Riding Billy at Woodleigh
June 2002Adam, Sarah, still smiling, and Emma
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Tim Burns (right) president of the Fine 14 for 2001/2002 found
that he had quite big hole in his pocket after handing over the
cheque for £3,300 to Paul Wootton of Max Appeal.
The Fine 14 is a group of Worcestershire business men who needed
to have a legitimate excuse for going up the pub so
they started raising money for charity in the 1970?s! But
se-riously the good work of the Fine 14 has raised many thou-sands
of pounds for good causes and can justly be proud of
their achievements.
Max Appeal was their nominated charity for 2001/2 and Paul?s
knees nearly gave way under the weight of such a large
cheque!
DiGeorge Charity Golf DayMagnificent £3,500
An elite group of 94 skilled and competitive golfers were out in
force for the third annual DiGeorge Charity Golf Day at Abbey Hotel
Golf and Country Club in Redditch.
The talented sportsmen enjoyed a day of sunshine, great prizes,
lots of banter and many red faces (not all due to the sunshine as
that fine air shot caught on video revealed!!).
The organisers, Gary Hawkesford and Paul Wootton, would like to
thank all the businesses and individuals who sponsored all 18 holes
and provided the many attractive prizes. The event ran very
smoothly and is a credit to the army of helpers who all made it
possible for everyone to have a great day and raise a fantastic
amount of money.
If you would be interested in knowing more about next
years event or if you would like to host a golf day of your own
then call Gary on 01562 710316 or Paul on 01562 733070.
The sunglasses proved no disguise for Andrew Taplin and Simon
Beddow who joined up with Peter Doyle and Julian
Sonksen along with the other 90 golfers to help raise over
£3,500 for Max Appeal and Birmingham Children?s Hospital heart unit
fund. Peter and Julian later gracefully accepted their prize of a
pair of brown nylon socks each for their
truly remarkable performance!!??!!
Our grateful thanks go to Mr Oakley and Alan Hollick of the
Shropshire Masonic Charitable Association
for their very generous donation of £500 at the Non-Masonic
Grants Presentation in Shrewsbury. We were also very pleased to
have the opportunity to take a dis-
play to the Grand Charity Meeting at Telford.£
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Tom Procter was born on 29th November 2000 weighing 5lb 7oz to
proud parents Emma and Paul.
Everything seemed great immediately after the birth until one
nurse started raising concerns over his poor feeding, excessive
sleeping, blue tinge and heart murmur (although they weren’t too
concerned about this as all newborns have a slight heart
murmur).
After moving up to the Special Care Baby unit at 2 days old the
Paediatric Consultant at Doncaster suggested that as Dr. Dickinson,
the Cardiologist from Leeds, was holding his three monthly clinic
at Doncaster that day it may be worth sending Tom down to see
him.
It didn’t take him long to diagnose Tom with Pulmo-nary Atresia
and VSD. Tom was 5 days old.
Tom was then moved to Leeds General Infirmary and was discharged
at 2 weeks old.
He returned in March and underwent heart catheterisation, which
confirmed Pulmonary Atresia with large collateral vessels, and VSD.
Cardiac surgery early on was recommended to prevent damage to his
lungs.
During the heart catheter, consultants also identified that Tom
had a narrow windpipe, which was very typical of someone with
22q11.2 and this caused a few problems during his recovery from the
catheter procedure and would have to be borne in mind for future
surgery.
Leeds General Infirmary checked his calcium levels, which were
OK during his post-birth period, and the family were referred to an
immunology team at St. James Hospital in Leeds.
Tom’s calcium and immune levels have been re-checked recently
and Emma and Paul were over the moon to find that they remained in
normal limits.
Only three weeks after being born, and already having to cope
with his heart condition,
Tom was rushed back in to Leeds General Infirmary on Christmas
Eve and was diagnosed with Bronchilitis. This meant another two
week stay in hospital over which time he suffered part of his lung
collapsing and it was during this stay that it was confirmed that
Tom had 22q11.2
Why do these things always happen at Christmas!
Tom managed to fight off this virus, which was probably helped
by the fact that his weight gain was very good. By the time he was
18 weeks old he had jumped from 5lb 7ozs to 13lb 3.5ozs!
After four months of being NG fed, Tom began taking all of his
nutrition and hydration orally and Emma and Paul are amazed at how
well he is taking his feeds.
It has been a slow process onto solids, but Tom is continuing to
enjoy his grub!
Tom was admitted for his open cardiac surgery in November 2001,
as discussed with Emma and Paul shortly after Tom’s Pulmonary
Atresia was diagnosed, which meant that he spent his first birthday
in hospital.
However, the surgeons found that Tom did not have a pulmonary
artery so they were unable to complete the procedure that they had
envisaged carrying out. Emma and Paul have discussed this with the
consultants and all parties are happy that
Tom is coping just fine with things just as they are – his
weight gain is good and he is happy and contented. He does get very
tired and breathless but he is on no medication.
Tom will be reviewed regularly and decisions about future
surgery will be made as he develops.
Tom will be two at the end of November and his mum and dad
cannot believe how the time has flown. Tom is able to communicate
wonderfully and has six words already.
His muscle tone is low and this had impacted on his motor
development and he currently is trying to move about on his bum! He
sees a physiotherapist and has a great amount of support at home to
encourage his crawling and walking. He has had several knock backs
this year with a couple of stays in hospital with
pneumonia and a severe dose of chicken pox but he just keeps
bouncing back.
And Tom has yet another thing to look forward to – he can expect
a baby brotheror sister to come along at the end of October…. Emma
and Paul are expecting their second child and are extremely
excited.
When Emma and Paul contacted Max Appeal when Tom was 18 weeks
old they said “the past 18 weeks have proved to be the most
emotional of our lives …..” and I think this is something that all
families will relate to.
Tom, Emma and Paul receive a tremendous amount of support from
their families, which has provided them the opportunity to enjoy
every moment with Tom and remain positive during the stressful
times.
Emma and Paul enjoy reading “Dear George” and were really
pleased to be asked to share Tom’s story with you.
Here’s wishing the family all the best with their forthcoming
arrival!
Introducing
Tom Proc-
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Max Appeal! received Worldwide Registered Charity Status in
August 2001 which, amongst other things, opens up many more doors
for fundraising activities, gives the Group stability and
credibility and allows us to receive valuable information and
advice from the Charities
Commission and Contact a Family.
If you’re organising a fundraiser be sure to use our Registered
Charity Number: 1088432.
If you would like information on how to make a donation to Max
Appeal!, carry out a fundraising activity or would be interested in
the give as you earn scheme then please call
01384 821227 or email Sharon Hunt, the treasurer, on
[email protected]
Contact us… …
www.maxappeal.org.uk Write to: Lansdowne House, 13 Meriden
Avenue,
Stourbridge, West Midlands, DY8 4QN
Freephone: 0800 389 1049 (24 hour answerphone service)
Julie Wootton: phone/fax: 01384 821227email:
[email protected]
Or contact your nearest regional co-ordinator: South East: Julie
Squires Tel: 0208 386 0885
email: [email protected] Ireland: Susan Maher Tel: 056
69455 email: [email protected]
South West: Des Taylor: 01242 524307 email:
[email protected]
North East: Tracey Muschamp: 01723 377012 email
[email protected]
Max Appeal! collection boxes now available phone/fax: 01384
821227
email: [email protected]
Great North Run!!
The “Centenary Boys”, Paul Wootton and father in law, Chris
McHale are now finely
tuned athletes!
They have also been joined by Paul’s 8 year old daughter,
Georgia, who is entered for the junior run!!
Fill in the sponsor form or ring: 01384 821227!!
£
Big Ben to Blackwell Bike RideAlan Dennett of Wyre Forest
Community Housing, has the mis-fortune to work with Paul Wootton
but that still doesn’t explain his lack of sanity for undertaking
this two day mammoth bike ride… I understand that “Sudacrem” is
very emollient and antiseptic… . But we are very grate-ful for the
several hundred pounds that his efforts have
brought in for Max Appeal!
A special thank you goes to
Charlotte and Katie Muschamp for their sponsored walk around
glorious Scarborough! These two girls have been through many tough
times but Mum,
Tracey, does a good job and their sense of fun goes a long
way!
Thanks girls!!
Updated leaflet on reflux with new
information provided by the Speech and
Language Therapy Dept of Great Ormond Street Hospital now
available. Phone for your copy!
