Registered Charity No. 1003314

Autumn newsletter2014

www.chsw.org.uk

Memory Stars & Christmas

cards

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See your fundraising

impact p4

Event registrations now open

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/chsw1991 @chsw /chsw1991 Join us online

A very special Welcome

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We are delighted to bring you this Autumn edition of our Newsletter. It’s been a busy year so far with community and corporate fundraising, CHSW events and a record breaking row all supporting the very special care that we offer 24 hours a day, 365 days a year.

Your support means the world to our families. In this issue you can read stories from families and children who use our services. Sophie’s Mum, Faith, tells us about what the hospice means to her family on pages 4 and 5. Ollie’s dad Neil tells us about his son and the support they receive on page 7. All of this is only available because of you – we really couldn’t do it without you.

You can give a family precious time together by playing our Lottery.

Find out more on page 8

Please get involved today!Ple

ase

ge

t involved

toda

y!

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

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In this edition

P 13:World record row success

P 14 - 15:Find events near you that make a difference

P 18 - 19:See behind the scenes on an open day tour

P 4-5:Sophie’s story tells of 7 years of care

P 6 & 12:How your community has been raising funds

P 7:Defying the odds; Ollie’s story from his family

P 8:Jess & Ruby help raise a smile with our Lottery

P 10 - 11:See how Corporate sponsorship can help

Feeling lucky?Our Christmas Draw is a great way for you to support CHSW, and you could be a winner! Simply buy tickets yourself or sell them on our behalf. Good Luck!

Christmas order forms and Draw tickets will have been enclosed in your newsletter, or you can request these from your local hospice.

Beat Santa in your Christmas planningOur order book is open for Christmas cards, 2015 calendars and diaries. Every purchase will bring festive cheer to your nearest and dearest, while supporting our families through the highs and lows of the festive season too.

This year our special memory stars are exclusively available in our Christmas selection brochure. Order yours now to remember someone special this festive season.

In memory of

a loved one

P 9:How music therapy transforms lives

Sophie’s Story

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Sophie and her family have used Charlton Farm for 7 years. Your support means we can be here for the family whenever they need us:

After 5 admissions to hospital in the space of a month, we knew that the fight

was now hers and hers alone. We thought our precious little girl was going to die. As she lay in her bed, cold and unresponsive, all I could do was climb in beside her, hold her fragile little body to mine and pray for a miracle.

All the time I knew that if I could just get her through the doors of Charlton Farm, whichever way she decided to go, we would all get the best love and care.

Thankfully our prayers were answered - we got our miracle and Sophie fought off the virus. Throughout that time the hospice staff took our broken spirits and helped nurture us all back to a cohesive little family, determined to give Sophie all the care we could to keep building on the improvements she made while she was there.

In the 7 years we have been going to the hospice, the care of our precious little porcelain doll has always been exemplary. This time they surpassed themselves.

Sophie’s Mum, Faith

We open our doors to supporters to show you what your support makes possible

See page 18 & 19

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Sophie

’s Story

In the 7 years we have been going

to the hospice, the care of our precious little porcelain doll has always been

exemplary.

Inspirational Fundraising

Car boots and busking Raised: Over £5000

9 year old Madison raised this commenting ‘an adult has had a childhood but these poor children have not had theirs’.

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St Austell to WestminsterRaised: £3,340

269 miles in 12 days, cheered on by the local communities, saw Steve and Anne Double complete this long walk for CHSW.

7 year old Connor’s walkRaised: Over £400

His school in Plymouth was the location of Connor’s sponsored walk, inspired by CHSW he set out to raise as much as he could – Thank you!

Community & beer festival Raised: £500

Claire, Gavyn and John rallied the community at the Old Albert public house Torquay for this Summer event.

‘Curryoke’ night Raised: £3600 for Little Harbour

Linda and family, whose grandson Lucas is supported at Little Harbour, joined singing staff from Café Indya with food, a raffle & auction.

Train vs bike Raised: £1715.45

A jokey comment became a serious challenge as Graham raced the Exeter to Barnstaple train on his bike, beating it by 4 minutes!

Your community support allows us to offer care to over 400 families each year, families like Ollie’s

Ollie

’s story / Your fundra

ising a

nd its im

pa

ct

When Ollie’s birth didn’t go to plan Dad Neil describes how in that moment their life changed forever.

“We stayed at his bedside for 24 hours a day and at 4 days old doctors

informed us that Ollie’s brain injury was so severe

he was likely to only live a maximum of 2 hours once taken

off the intensive care support. At this point we were able to hold him for the first time, it was our first proper hello and we were told it would soon be our goodbye.

But Ollie fought back and defying the odds he shocked doctors by opening his right eye. A couple of days later he also opened his left eye. Against all the odds,

we recently celebrated Ollie’s 2nd birthday. Our life is very different to what we might have imagined. Ollie suffers from HIE grade 3 (severe brain injury), epilepsy, cerebral palsy and is registered

blind. He is unable to swallow and has had two operations to fit a tube which pump feeds him 20 hours a day. He has medication every 1.5 hours from 8 am until 11pm. He goes down

Ollie’s Story

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for bed around midnight, but will usually only sleep 4-5 hours. Due to his epilepsy his routine could change anytime: he could have a fit anywhere, anytime or trouble breathing. Because of his complex needs, the time we spend together at Charlton Farm is really precious. For us as parents it is a nice time to recharge ready for when we go home again. We can enjoy the facilities as a family; Ollie loves the hydrotherapy pool and sensory room, experiences we can’t offer him at home.”

We just appreciate every

second, every breath we have with him. Our day to day

life has changed completely but we are so happy he is here and

we would do anything for him.

Thank you to everyone at

Charlton farm for everything they do, all the nurses and care team who help and support us,

it’s an amazing place.

Our Lottery needs you

L ttery

our

raise a smile

£200 / week rollover

up to

£10,000

The draw takes place every Friday. There are 14 regular possible cash prizes with a top prize of £1000!

If you have won we will send you your winnings it is that easy! You don’t even have to claim. If you want to check how you’ve done you can look up the results on our website atwww.chsw.org.uk/lottery

Winning is easy

Why play?Jessica Parsons, her younger sister Ruby, Mum and Dad live in Exeter and visit Little Bridge House in North Devon. Nine year old Jessica suffers from a condition that is so rare no one knows quite what is wrong, being referred to as a syndrome without a name ‘swan’.Little Bridge House is a lifeline for the whole family especially four year old Ruby. Ruby is a fun loving and very sociable little girl who likes to play with our sibling team and most of all enjoys painting, gluing and anything messy!

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Playing is easyYou can sign up online or request a

form by emailing or calling our lottery administrator Stephanie.

www.chsw.org.uk lottery@chsw.org.uk

(local rate) 08456 888911

At CHSW we are always raising a smile and our lottery is calling for more players to helps us do this.

Since October 2012

we have had 99 £1000

winners and £10,600 has

been won in our rollover!

Thank you & Good Luck!

Our Lotte

ry nee

ds you / M

usic the

rap

y

Music Therapy

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Thanks to your support, during 2012 we began to introduce music therapy in all three of our hospices. Ceridwen our music therapist at Little Bridge House explains more:

I believe wholeheartedly in the power of music to

transform people’s lives.

Music is first of all physical by its very nature. It affects our heart rate, it can stimulate and invigorate as well as relax and de-stress.

Music is social. People are drawn together when listening to and

making music.

It binds us together at

times of great joy and enormous sadness. Music is psychological.

My you’re a

happy chap Mr! He’s beaming

– he obviously enjoyed that!

This is the most

responsive she’s been in several days – it’s lovely

to see…

Are you a music lover? You can help us continue this ongoing work with a special gift

Contact us on 01271 325270

She’s given you

some lovely smiles. You have made a good connection

with her – she’s really listening to you and

concentrating very hard…

He’s really

relaxed since coming in here

(music therapy). He’s very happy!...

Music Therapy focuses on what children can do rather than what they cannot do. Children often leave the music room with a big smile on their faces, having achieved something they never thought they could.

Music is spiritual. I have on several occasions, had the privilege of spending time with children during end of life care, who still respond to music. These moments are hugely moving and it is during these sessions that I feel that we have crossed over into a spiritual connection, whereby children still respond to music when they are responding to very little else.

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Corporate Sponsorship of events and appeals

RIDE FOR PRECIOUS LIVES

3 DAYS 3 COUNTIES 3 HOSPICES

Case StudyVacuum technology company, Edwards, in Clevedon has been sponsors of CHSW events since 2009. Sponsorship to cover the cost of organising the event means that all money raised by participants is able to go straight to our service in supporting life-limited children.

In the last six years, the hospice has

raised over £290,000 through an annual CHSW event that Edwards has sponsored, but not only that, we have noticed an improvement in employee morale and awareness of Edwards in the community. We intend to continue our support for Children’s Hospice South West in the future and would recommend any local businesses considering similar sponsorship to take the plunge.

Linda Brewer, Head of Communications, Edwards

Edwards took part in our Ride

for Precious Lives event 2014,

sponsoring as well as cycling!

Sponsorship of our events and campaigns is a fantastic way for businesses to get involved. The benefits of sponsorship can include increased brand awareness, media exposure, positive PR and a strong connection to a recognisable and worthwhile local cause. In addition to this we can offer volunteering opportunities and free places on our events for employees.

An apt gameTriden Elite have offered their skills in technology to create an App – a downloadable game for your smartphone or tablet. This addictive game called Smile Stacker is available to purchase from www.chsw.org.uk/partners with £1.49 from every sale coming to CHSW.

Corporate support could help fund hospice children’s messy play masterpieces, like this one inspired by Edward’s participation in Ride for Precious Lives

Corp

orate

Supp

orters

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Corporate Sponsorship of events and appeals Crazy cyclingGilletts Callington Ltd, who own a chain of SPAR shops across the South West, celebrated the 30th Anniversary of opening their first store in Callington by raising £33,000 for CHSW in a sponsored SPARATHON - a 327 mile cycle, visiting 30 of their stores, through four counties in just five days. The money raised will pay for a children’s nurse at Little Harbour for a year.

A sky high challengeTeam Unite the Union took on a skydive and gave a £3,000 donation towards our new Sponsor a Nurse initiative, raising £6,688 in total!

Contact us for your opportunityThere are some exciting opportunities still left to sponsor this year, including Santas on the Run events in Taunton and Bristol, as well as more for 2015. To find out more or to discuss email corporate@chsw.org.uk

Other ways to helpSponsorship is just one way for your business to get involved

Inspirational Fundraising

A bike and foot challenge Raised: Over £10,000

A month of 1000miles cycled and 260 miles run by Liam who took his inspiration from daughter Laosie who uses Charlton Farm.

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Glastonbury festival stories help raise fundsRaised: £650

Michael relayed amusing stories relating right back to the first ever Festival in 1970 as guest speaker at a dinner at Saltford Golf Course, Bath organised by Rotary Club of Keynsham.

Walk for Precious Lives in the community Raised: £325

Estelle and Barry and 19 of their local Timsbury Walking Group took part in an energising trek through beautiful Mendip countryside, followed by a delicious lunch.

Last night of the proms Raised: £2500

The Rotary Club of Exmouth & District hosted this musical feast at Exeter Cathedral- wonderful!

North Devon Road RunnersWith marathons, fun runs and 10ks all organised by the North Devon Road Runners our thanks go to them for choosing CHSW as the benefitting charity.

Your support means we can offer care from diagnosis through to bereavement and beyond – often for many years

ATLANTIC C H A L L E N G E

2014

Precious Lives

The Precious Lives Atlantic Challenge rows into the history books as Chris ‘Darby’ Walters and Elliott Dale set foot on the quay on the Isles of Scilly on Wednesday 6th August at 10.34 (GMT).

The intrepid duo rowed 3246 miles from New York to the Isles of Scilly after an incredible 60 days, 1 hour and 6 minutes at sea. This epic challenge has raised over £122,000 to date for CHSW and set a new modern record for this journey.Read the blog of their epic journey here www.chsw.org.uk/row-blog

You are still able to make a donation to this incredible challenge and help them achieve their fundraising goal:

World Record SuccessInsp

irationa

l fundra

ising / W

orld Re

cord

Succ

ess

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The 55 year old duo, in the pairs rowing boat ‘Row4PreciousLives’, battled the most atrocious weather conditions during the challenge to be accompanied in the final miles by a flotilla of 40 boats and the biggest quay-side welcome St Marys has ever seen.

‘PLAC14 £x’ to 70070 (Insert amount you wish to donate)

www.chsw.org.uk/row

THEY’RE HOME!

Join an event

Moonlight Memory WalksPlaces still available

• 27th September, Falmouth• 11th October, Saltash

www.chsw.org.uk/moonlight

Celebrating memories

with every step

memory walkmoonlight

Santas on the RunHO HO HO Pre-register today!

Visit our website for dates and locations across the South West – you will receive a free Santa suit with your entry, so join the fun!

www.chsw.org.uk//santasFirewalk Registration is hotting up!

• Little Bridge House, 7th November

www.chsw.org.uk/firewalk

FIREWALK

Take part in the hottest

shortest sponsored

walk!

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It was such a

great atmosphere, a challenge for me and a great way to help support the charity

too

September

Our Rainbow Runs and Ride for Precious Lives were a

huge success in 2014 thanks to you. Pre-register

now to ensure you don’t miss out in

2015! www.chsw.org.uk/events

October November December

UPCOmINg RUNS:

2015

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GSWWThis September 20th- 28th, CHSW are delighted to have been chosen as a beneficiary of the Great South West Walks - 100 popular circular walks focused around the Coast Path in Somerset, Dorset, Devon and Cornwall.

Led by the charity, the South West Coast Path Association, there will be guided sponsored walks of various lengths, to suit all types of walkers. Many will be themed to include wildlife walks, family friendly walks, etc.

For further information about the Great South West Walks 2014 and to register please visit

www.GreatSouthWestWalks.co.uk

Contact the South West Coast Path Association on info@swcp.org.uk or call 01752 896237

RUNNING CLUB • Barnstaple full and half marathon

28th September – Contact us for

Gold Bond places.

• Exeter Great West Run 19

October – Book direct then let

us know if you are running for us!

Application open now!

• Glastonbury Festival Run 10k 12

October – We are charity of the year.

Book direct then let us know!

• Monster Race 5k & 10k 1

November – We are charity partner

so contact us for reduced entry fees.

• Plymouth 10k 2 November –

Book direct then let us know you if you

are running for us!

• Weston-super-mare Grand Pier

Half Marathon 2 November –

book direct then let us know if you are

running for us!

Throughout the year we are supported through runs across the country, from 10ks to marathons there is something for everyone.

You can find details about all the runs you can take part in to support CHSW at

www.chsw.org.uk/running

• Bath Half 1 March – Silver Bonds

now available, contact us today.

• Virgin London Marathon 26 April

– Gold Bonds now available, contact us

today.

Join in our eve

nts

Ebb & Flow A special place for one familyOne little boy who sadly died recently, had been at Little Harbour for end of life care as the Ebb & Flow garden was being built. He had been shown around the garden as finishing touches were being laid, and felt some of the pebbles being put into the water. For his family there is a lasting and lovely memory within the Ebb & Flow.

Activities Co-ordinator Jacqui spent time with a recently bereaved sibling, in the garden:

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He asked if we could go could go and eat our

sandwiches outside in the Ebb & Flow garden together.

Whilst sat there contentedly munching our sandwiches he started talking about his brother and how he was feeling about it all - tearful, angry, and sad. A little bird came up beside us and pecked at the crumbs the sibling had dropped, he then said his brother was the bird and he had come to say hello.

This gave us an ideal opportunity to have a long talk about death, our feelings about it and people’s beliefs in a relaxed, calm and natural environment, it being a lovely sunny day with the sound of the water trickling - we felt so close to nature.

This year Little

Harbour welcomed to its grounds the beautiful sensory

‘Ebb and Flow’ garden.

To find out about funding a specific project at one of our hospices contact us.

www.chsw.org.uk/contact-us

Ebb

& Flow

ga

rde

n

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About the gardenThe garden has a series of pebble waterways with a tiered water cascade and a swirl touch pool. The garden features shrubbery planted around it with decking and paving laid down to make it accessible to the children even if they are in wheelchairs.

Children and their parents can paddle their feet in the stream below the cascade and can touch the water with their hands in the swirl pool.

These are all experiences which are everyday activities for some children but for children with such complex medical needs, this could be the first time that they experience these sensory moments outdoors.

I just went out to sit in

the water garden, it’s lovely!

Calming

I could sit here all day

Enjoying the gardenRevelling in the sounds and sensations of Little Harbour’s new ‘Ebb & Flow’ garden, Liam dips his toes in the cooling water pool during a sunny summer day.

Thank y uThis project was made possible by the funding from 2 special sources – Aviva, after Jelf Insurance Brokers in Plymouth nominated CHSW to be recipients of Aviva’s Community Fund. As well as the Duchy Health Charity, who help improve the well-being, health and care of people in Cornwall.

Calm for all hoursBoth in the light and the dark hours the garden provides a haven of calm and rest.

Open Days

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Did you know we open the doors to our hospices once a month and offer guided tours to show you exactly why your support is so valuable?

We are taking bookings now: it could be just you, a small group of friends or your entire company – either way we’d be delighted to see you.

We understand that some of you may be nervous about visiting and unsure of what to expect. Our experienced tour guides, made up of staff and volunteers, are sure to make you welcome and we know that once you see inside these incredible

havens, the reservations disappear.

Book your tour today and come and enjoy tea and biscuits and meet some of the team

It’s much friendlier, warm,

welcoming, bright and safe than I expected

To be honest I didn’t really know what to expect, but today has

inspired me to do so much and not take my life for

granted!

The building is

inspirational – as are the amazing staff who work here to create so many special memories

for the families who visit

What people have said about visiting...

Amazing, peaceful place, more than anyone could

expect

All the people involved

in any way, shape or form are absolute angels, wouldn’t have missed this

experience for the world

The hospice and what it represents

is truly amazing. Everyone should see for themselves the wonderful care and facilities

children and families are offered, a truly humbling

experience

After a tour the room is always filled with talk about how nervous they were before they arrived here but how positive and vibrant the house is and how uplifting they found it, there is a real buzz, I love being a part of it

Jen has been volunteering at Little Bridge House for 5 years, she is always on hand to provide tea and biscuits after a tour.

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Barnstaple, Devon 01271 325270

Wraxall, N Somerset 01275 866600

St Austell, Cornwall 01726 871800

Book you, or your

group, on a tour at

your local hospice

For our teens, time away from home and Mum and Dad to simply be a teenager is vital.

Hear about our work with teens

Spiderman, Wolverine, the Joker, an Assassin, an Incredible and the Invisible Man were ably supported by Banana-Man and a collection of

other Marvel types for the Sci-Fi Comic Book Teen Weekend to remember.

The Games Room transformed in to the bridge of Captain Kirks’ Starship Enterprise, albeit with a bit of Star Wars and Dr Who thrown in.

Six of the teenage lads were beamed up into their own science fiction fantasy comic ship. A weekend of parent and sibling-free fun was had by all. “The best day of my life”; “thank you”; and “fantastic” were just some of the quotes from the lads.

Join us at a

n Op

en D

ay

Registered Charity No. 1003314 Registered in England No. 2620879

Little Bridge House 01271 325270Redlands Road, Fremington, Barnstaple, Devon EX31 2PZ

Charlton Farm 01275 866600Charlton Drive, Wraxall, North Somerset BS48 1PE

Little Harbour 01726 871800Porthpean Road, Porthpean, St Austell, Cornwall PL26 6AZ

www.chsw.org.uk

Gifts in Wills at CHSWGifts in Wills are vital to charities and we know that some of our supporters may be asked to act as a Lay (personal) Executor of an Estate. If you have been appointed in to this important position and would like guidance, regardless of whether the Will includes a gift to CHSW, Rob would be delighted to send you our free guide and talk you through the process, if required.

Finding out more about leaving a gift to CHSW in your Will

If you’re a member of a club or group, Rob can provide your members with a talk about our charity and how important legacies are for our future, or take you on a tour of one of our hospices to explain our services in detail. And if you’re unable to travel, but would like to know more about CHSW and leaving a gift in your Will, without any obligation to do so, Rob can visit you for an informal chat about our services, in the comfort of your own home.

Rob Emery, Legacy & Remembrance Officer

01271 325270

Rob.Emery@chsw.org.uk

Every few months I spend a day with our sibling team.

As well as always being a busy, noisy, fun-filled day it reinforces to me why legacies are so important to the charity. Every legacy we receive, whether it’s £50 or £50,000, will ensure our services for siblings, Mums and Dads and life-limited children can continue.