Registered Charity No. 1003314

Registered Charity No. 1003314 Registered in England No. 2620879

Children’s Hospice South West Little Bridge House, Redlands Road, Fremington, Barnstaple, Devon EX31 2PZ Tel: 01271 325270

Children’s Hospice South West Charlton Farm, Charlton Drive, Wraxall, North Somerset BS48 1PE Tel: 01275 866600

Children’s Hospice South West Little Harbour, Porthpean Road, Porthpean, St Austell, Cornwall PL26 6AZ Tel: 01726 871800

Summer newsletter2013

www.chsw.org.uk www.chsw.org.uk

Help make a difference

How your money helps

Find an event happening near

you

p3

p14

p18

A regular gift makes a difference

You won’t need a stamp but if you choose to use one you’ll be saving valuable funds. Thank you.

You can make your donation worth even more when you

Decide what you can give

Complete this form (overleaf)

Return it FREEPOST to:Children’s Hospice South WestFreepost (SWB30894)BarnstapleDevonEX31 2ZZ

I want Children’s Hospice South West to treat all donations I have

made in the previous four years, and all donations I make from the date of this declaration as Gift Aid donations, until I notify you otherwise. I understand that I must pay an amount of United Kingdom income tax and/or capital gains tax (VAT and council tax do not qualify) at least equal to the tax that all charities and CASCs that I donate to will reclaim on my donations in the appropriate tax year (currently 25p for each £1 that you give).

In 2012 we claimed a staggering £165,000 in Gift Aid, it really is so valuable, so tick the box to Gift Aid and fill in the form on the back.

/chsw1991

@chswFor every pound you give us, we get an extra 25p if you Giftaid.

£10 a monthcould help run our specially

adapted mini buses, providing transport for family days out and

stays at our hospices

£10 a monthcould help run our specially

adapted mini buses, providing transport for family days out and

stays at our hospices

£5 a monthcould provide arts and crafts materials for fun-filled family

days in messy play!

£15 a monthcould provide families witha

home-cooked meal and the rare opportunity to eat together

during their stay

We

lcom

e / Re

gula

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Welcome to our Summer Newsletter! Some of the children and families who find the care, support and companionship provided within our three hospices of help on their very difficult journey, have very kindly agreed to share their inspirational stories and beautiful pictures with you. This is very much a personal ‘thank you’ from them for the incredible support you give in raising awareness and funds for Children’s Hospice South West. We are also celebrating an extraordinary and most colourful first half of 2013, with the CHSW fundraising team and many of you across the South West creating your

own inspirational stories for us to share. This includes

CHSW holding the UK’s very first Rainbow Run and 80 very committed cyclists completing Ride for Precious Lives.

The funds and awareness raised by every supporter

are what allows Children’s

You can see this newsletter online too at www.chsw.org.uk/email-newsletter

In this edition are some wonderful supporter stories and friends group successes. Each one is inspiring and heartwarming and one of the many we are celebrating with you this summer.

Help make a difference by completing the short form on the back page.

Pass it on!When you’ve finished reading this share it with your family and friends.

Your regular gift really helps

32

Hospice South West to provide care across the whole of this extensive region of ours. When calling the CHSW Lottery ‘Our Raise a Smile Lottery’, that ‘our’ includes every person, group and organisation who has supported our charity. Together we are actually making a difference to children and families who have been given the most devastating news, and deal with such difficult circumstances every day. There are so many smiles and so much joy, as well as sadness, evident every time I step within Little Bridge House, Charlton Farm and Little Harbour. Thank you for your ongoing support, we are inspired by you and very privileged to be raising awareness and funds with you.Very best wishes

Alana Marie SmithDirector of Fundraising

Regular gifts are, along with Lottery subscriptions, our most reliable donations.You provide essential stability and continuation of service when signing up to a regular gift.Thank you for this continued support.

What your support can achieve:

Complete the form on the inside back page and return it Freepost.

Welcome

Without your help we could not provide this care

and support.

P 8/9: In celebration of Charlton Farm

P 6/7: Bristol alive with colour

P 10/11: A story from Little Harbour

P 12/13: An inspirational cycling event

P 14/15: Stories from Little Bridge House

P 16/17: Inspirational fundraising

P 18: Upcoming events

P 4/5: Bereaved mum runs the rainbow

P 19: Your regular gift really helps

Did you know....We supported 334 bereaved families in 2012.

Bere

ave

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rainb

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Bereaved mum runs the rainbow

Support us ??????54 Why not share your story with us? – Contact your local hospice

One of our bereaved mums and her family and friends took part in the Rainbow Run in memory of her son Toby. Kim’s son Toby, who had cancer, died at Charlton Farm in 2008 aged 13. He was the first child to die at the hospice. This is Kim’s story in her own words:

CHSW has given our family so much support over the last

five years since our son Toby died; I don’t know how we would have coped without them. From the moment he first visited Charlton Farm Toby loved it, describing it as ‘cool’ – the staff always made him feel special.

The support we’ve had from the care team since Toby died has been amazing. I regularly meet up with the Star Mums. It’s such a help to talk to other people who are in a similar situation and to support each other.

Kim and Toby were able to share some great

times splashing around in the Jacuzzi (pictured opposite). Because they get the Jacuzzi to themselves,

families can totally relax and just enjoy being together.

Angie care team member at Charlton Farm

When we heard about the Rainbow

Run we thought it would be the ideal way to say

thank you to CHSW and a lovely thing to do in

memory of Toby.

Did you know....We support the whole family - including siblings, parents and carers.

Follow us on Facebook www.facebook.com/chsw1991 or Twitter @chsw

Did you know....we’ll be bringing a Rainbow Run to a town near you in 2014! Look out for details

Bristol alive

iwth c

olour for fam

ilies like

Loga

n’s

Support us ??????76

We brought Bristol alive in an explosion of colour when we celebrated the UK’s first ever 5k Rainbow Run. Runners started the event in white and ended up covered in all colours of the rainbow. It was a triumph - they raised a momentous £70,000

This is Logan with his Auntie Hannah and Charlton

Farm staff Jenny (one of our family contacts) and Karen. We had a wonderful

day and the atmosphere was as vibrant as the paint colours! Thank you to all who took part

and supported this event. I know all of the families that CHSW supports, including

ours, are very, very grateful!

I have done 100’s of runs and can honestly say

this one was one of the best by far.

Bristol alive with colour for families like Logan’s

Phot

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a cracking event and I would encourage anyone to take part, the most fun I have had in

such a long time - Thank you!!

Thank you for an amazing day, ran in memory of

my nephew who you helped care for, he would of laughed his head

off seeing me do this for him!

Register to find out first whiere Rainbow Run will be in 2014 www.chsw.org.uk/rainbow-run-registerWe always need volunteers – contact your local hospice for more information

Phot

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Did you know....A magnificent £8.5 million has been raised by our Friends Groups since the first group was set up in 1994.

In ce

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harlton Fa

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In celebration of Charlton Farm

Did you know....We’ve made around 3,500 magnificent creations in Messy Play at Charlton Farm.

Support us ??????98

Cerys was born with a genetic disorder called Edwards Syndrome. Her parents Caroline and Sean describe her as beautiful, quirky and strong. Initially they were reluctant to use the hospice but all that changed with the care they received. Nothing was ever too much trouble and staff were on hand day and night if needed.

Charlton Farm whilst Cerys was staying at the hospice and have since gone on to form Cerys Cuddles - a local Friends Group - in her memory.From collections to speaking at corporate events, to taking part in events their drive and passion ensures the memory of Cerys will live on.

Children’s hospices are places of wonder

and happiness, filled with children and parents alike all of whom are truly inspirational.

The sun shone for the Charlton Farm Summer

Fete, an annual event loved by families and supporters.

See how your donations make a difference, visit us on an open day at Charlton Farm 01275 866600Making the most of short and precious lives across the South West

With a strong support network of family, friends and colleagues Caroline and Sean are instrumental in raising large amounts of money and tremendous awareness of our charity. They started fundraising for

Nicole’s illness means a part

of her brain is missing, which has left her with profound disabilities. She can’t walk or talk, has lots of seizures, requires a lot of medication and is registered blind. She is allergic to the sun, and very poorly so we have to stay in a lot. Despite this she is very vocal, likes to shout and loves people.

Family life though lively is very hit and miss as we have to make regular visits to the hospital.

I was apprehensive on our first visit as I expected to be bored

Little H

arb

our fam

ily story

Little Harbour family story

Join Sherry & Ashley on a Memory Walk; Falmouth 21st September or Saltash 5th October.

Sherry and her daughter Ashley have taken part in previous Memory Walks and are walking again this year in Falmouth.

Listening to the poems and the readings in the ceremony before

the walk is very moving. It’s an amazing event and I would encourage everyone to be part of it. You can’t describe the atmosphere, or how you’re going to feel. I’m no fitness fanatic but five miles is very achievable. It’s wonderful that people come out to support our children, to raise funds for Little Harbour. I’ve got my Memory Walk medals on my wall as I took part for Nicole. Everyone is walking for a reason,, whether for a child,

Support us ??????1110 Register, or help volunteer, for the Moonlight Memory walks at www.chsw.org.uk/moonlight See how your donations make a difference, visit us on an open day at Little Harbour 01726 871800

Family life can be hit and miss for our families but visits to the hospice enable them to feel part of a larger family. The hospice experience can appear daunting before a first visit but concerns are soon put to rest.Sherry Parsons and her partner Daniel use Little Harbour with their daughter Nicole who has Aicardi Syndrome, and her four siblings; Ashley, Toni, Mark and Harvey.

not allowed in public swimming pools so to see her in the Jacuzzi was amazing.

When we left it was only the second time in nine years that someone said “thank you for letting me look after her.”

The fact they enjoyed it meant the world to me, it tugged on my

heartstrings.

Our experience there was wonderful and the kids can’t wait to come back.

memory walk5th October 2013

moonlightSaltash

21st September 2013Falmouth

without all the caring, washing and cooking to do but it was so nice to do nothing and have Nicole with us without the responsibility. Nicole can deteriorate quite quickly but the care team took care of everything with confidence and skill. She even enjoyed her first splash in a Jacuzzi. Because of the risk of a skin infection she’s

mum, or brother or to support someone else. The walk introduces you to other people who have lost someone precious. Do it once and you’ll want to do it again!

The m

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South We

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Support us ??????1312 Sign up for Ride for Precious Lives 2014 www.chsw.org.uk/ride

80 cyclists rode over 200 miles from Little Harbour to Little Bridge House and on to Charlton Farm in June. Inspired by the wonderful welcomes they received from the families staying at our hospices, the ride brought laughter, tears, pain and exhilaration and raised £70,000!

To have visited the hospices and met some

of the families and children was overwhelming and really

put everything into perspective as to where the money goes

and what a difference it can make.

An inspirational cycling event

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Life

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Your support at events like this is invaluable – thank you!

We’re feeling a little nervous,

anxious and excited! But it’s a great way to raise money for

such a worthwhile cause. CHSW were brilliant at looking after Emily

and this was our way of giving something back.

The atmosphere has been great and the

camaraderie excellent. It’s tough but thoroughly

enjoyable.

I rode my bike the other dayOver the hills and far awayTo help a child I have not metBut a child that I cannot forget For this child is a special oneNot my daughter, not my sonBut someone’s loved one just the sameA cherished Jack or Jill by nameA child who, unlike mine it seemsMay never grow like parents dreamTo run and play out in the sunBut who is still a special oneA child who has a familyWho need support and empathyWho need to know someone to careA helping hand, a problem shareA child who needs a special placeWhere they can leave a little traceOf their life here with us and knowA world of caring, not of woeSo think of little Jack or JillAs you pedal up life’s hillIt’s worth a lot of pain and strifeTo help a little precious life

A poem by Bob Richards, a Ride for Precious Lives cyclist. RIDE FOR

PRECIOUS LIVES

The Chlopecki’s are a close-

knit family who benefit greatly from being able to spend time together at Little

Bridge House. The Games Room is the place they have most fun, a place they get to switch off

from the daily round of care. Their smiles and cheers were in abundance as they greeted

the riders. Pictured here with sponsors Edwards and their tandem.

Stories from

Little Brid

ge

House

Support us ??????1514

New outfits bought, and treatments applied for a girl’s night out at a local restaurant. Hair was curled, straightened, tweaked and back-combed. Nails were filed, polished and coloured and faces were made up like film stars. Lots of chatting and laughing meant the atmosphere and sheer enjoyment of the occasion was shared by all. Reflections on the day with night care staff show how much these occasions mean to our teenagers. Going out in the evening for our teens is a treat which we can facilitate at Little Bridge House – at home they would love to be spontaneous but often carers finish work at 6pm and as a teenager you don’t always want to go out with mum and dad!

I love the nails and pampering. Mum and dad get

to take my brother out and I get to come on my own.

Sophie, at Little Bridge House

From the moment you walk in

everything is special! The welcome, the care, the

activities, we are so grateful

We know she is being looked after

and they’re used to all her health problems. She’s been going for a year now and the staff all know her. You don’t

get just anyone looking after her.

It’s got really good facilities, the

people are incredibly caring and they do try very hard to get her

out and about

The Copp household is a busy one and life is unpredictable as 2 of their 4 children have a life-limiting illness. Family visits to Little Bridge House enable them to unwind, de-stress and spend time together before heading home to their hectic lives full of hospital appointments and caring for the boys.

Stories from Little Bridge House

Thoughts from families at Little Bridge House

Hearing the warm hellos,

Seeing all the familiar faces,

Smelling the outstanding cooking,

Tasting the amazing food,

Bouncing around in soft play,

Chit’ chatting all day,

Relaxing in the Jacuzzi,

Getting creative in messy play,

Putting on some tunes in the games room,

Having a magical time in Narnia.

All these things cheer me up when I

Come to Little Bridge.

A poem by Chloe Leigh (a sibling) age 12

about how she feels when the family stay at

Little Bridge House

Individual care and needs makes

a difference.

See how your donations make a difference, visit us on an open day at Little Bridge House 01271 325270Follow us on Facebook www.facebook.com/chsw1991 or Twitter @chsw

Inspira

tional fund

raising

Support us ??????1716

This small selection of your amazing events and activities celebrates your inspirational support of Children’s Hospice South West.

From the oldest to the youngest our Friends Groups demonstrate their commitment, creativity and care for the charity and through their tireless work raise awareness and funds across the whole of the South West to ensure we can give our families the best possible care - to name just a few:

Years were no barrier: supporter Ray Hales took to the skies at the tender age of 85

Showing no fear for raising funds Dave and his Golf Days have made more than a hole in one over the years – in fact they have raised £74,000

Proving no idea is too big or too small, Bridgwater FG has raised a staggering £250,000 (and counting) through events, collecting tins, and in-store collections.

Not for the faint hearted – more than 200 runners scrambled the Hartland Hartbreaker.

280 miles of non-stop riding for Georgia as Martyn and Stuart cycled from Exeter to Lands End

26 teams took part in the first ‘It’s a Charity Knockout’, raising in the region of £15,000. Pictured are the ‘Rockpool Rejects’, our Little Harbour care team.

Future editions of our newsletter will feature more of our supporters’ stories Join or start up a Friends Group – contact your local community fundraiser www.chsw.org.uk/friends-groups

The Launceston FG, which started in 1993, came about because Eddie and Jill asked them to join their ‘crazy scheme’. Each member has a role they feel comfortable with and gives as much or as little time as they can, including one lady who turns up at events with her rubber gloves and pinny, and is in the kitchen until everything’s clean.

Chulmleigh Friends Group have had so much fun over the years raising money for CHSW and at one of their earliest events, were joined by Jessie Fullbrook who has served the teas and coffees ever since. Their annual events include Jazz by the Riverside and Welly Boot Day, not to mention their Harvest Festival event in a pub, raising £139,665.70 since they started in 1991.

Bubbly Bubbles FG – Our newest and possibly youngest Friends Group – they started off by raising money on a sponsored 5mile bike ride and continue to organise regular Teddy Bears Picnics

Inspirational fundraising

Somerset Music Festival - ‘Sat In a Field’ 23rd - 25th August tickets@satinafield.com

10 1918Up

com

ing e

vents

Could you challenge yourself, for us, this year? www.chsw.org.uk/challenge

I would like to help make the most of short and precious lives

Instruction to your Bank or Building SocietyPlease pay HSBC for the account of Children’s Hospice South West DD Account, A/C No: 12201712, Bank Sort Code: 40-14-13 subject to the safeguards assured by the Direct Debit Guarantee. I understand that this Instruction may remain with Children’s Hospice South West and if so details will be passed electronically to my Bank/Building Society.

Signature Date

I want to support your work but I am unable to give at the moment. We would be pleased to send you an acknowledgement, but if you would prefer not to be thanked for your gift, please tick here. We may wish to contact you in the future. If you do not want to receive any further information, please tick here. All the data we hold is gathered and managed in strict accordance with the Data Protection Act (1998). We will not disclose any information supplied by you to any third party organisations.

I wish to give £ each month starting on 16th of (month) (year) until further notice.

Mr Full name

Date of birth

Your address

Postcode

Tel no. Email

Mrs Miss Ms Other

Full name and address of your bank / building society

To: The Manager Bank/Building Society

Address

Postcode

Banks and Building Societies may not accept Direct Debit Instructions for some types of account

Please make an Instruction to your Bank or Building Society to pay by a Direct Debit

Originator’s Identification Number

FOR CHILDREN’S HOSPICE SOUTH WEST official USE ONLY. This is not part of your Bank or Building Society.

7 1 0 0 4 1

Account no.

Branch sort code

Name(s) of account holder(s)

A re

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Upcoming EventsAugust4th Prudential Ride, London-Surrey11th Doggie Trek, Exeter

September7/8th Skydive, Perranporth 8th Skydive, Honiton14th Mountain Bike 4 Life, Dulverton15th Bristol Half Marathon21st Moonlight Memory Walk , Falmouth22nd Grand Pier Half Marathon, Weston-Super-MareOctober5th Moonlight Memory Walk , Saltash6th Royal Parks Half Marathon, London13th Great West Run, Exeter16th Firewalk, Marazion20th Portishead Half Marathon30th Firewalk, Newquay31st Firewalk, Street

2, 8 or 13 miles to enjoy aimed at all levels and designed for fun not endurance.

www.chsw.org.uk/bike4life01271 325270

Bring your four-legged friend and join us for a 9k or 4k walk.

www.chsw.org.uk/doggietrek01271 325270

FIREWALK01271 325270 www.chsw.org.uk/fire

ATLANTIC C H A L L E N G E

2014

Precious Lives

New for June 2014...

Celebrating memories with every step.

www.chsw.org.uk/moonlight01726 871800

memory walkmoonlight

In June 2014 Elliott Dale and Chris Walters will undertake arguably the toughest transatlantic rowing challenge, 3,246 miles from New York to the Isles of Scilly, as they attempt to break the current two men in a boat transatlantic record of 55 days, which has stood for 117 years.

2 men . 3246 miles . 55 daysgruelling Atlantic Oceanone world r ecordfor short and p recious lives

Remember to tick the Gift Aid box on the back of this form

www.chsw.org.uk/precious-lives-atlantic-challenge

Donate nowor find out more at