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Registered Charity No. 1003314

Spring/Summer newsletter 2014

p3 Win £5000 in our Annual Draw!

Ryan’s star legacy


Precious Lives Atlantic Challenge


Welcome A Regular Gift thank you By giving to CHSW on a regular basis you help us to build a secure future. Every gift, big or small really does help. Many wonderful supporters already donate in this way – thank you for this special gift. If you are able to support us with a regular gift, please use the form on the back page or donate online

Welcome to our first Newsletter of 2014. Our focus, as always, is on our families and sustaining the level of care we offer. Our fundraising plans this year promise to be exciting with the return of one of our most successful events from 2013, the Rainbow Run. We are also introducing a new walking event at Charlton Farm this Summer. Our events, alongside all the amazing fundraising that our supporters do for us in their local communities every day, mean we are looking


forward to the year ahead and continuing to make a difference to short and precious lives. Every fundraising activity is special and makes a world of difference to our families. But this year two men are undertaking something extra special, inspired by our families – The Precious Lives Atlantic Challenge - a world record attempt to raise money for CHSW. We are honoured to have been chosen as the recipients of this unique challenge, find out more on page 16 to see how you can get involved too. Thank you for your on-going support, without you we couldn’t do what we do.

Very best wishes Alana Marie Smith

You can also view this newsletter online at

Annual Draw

Go green!

It’s that time again – Annual Draw tickets are now for sale! This is an easy way for you to help support us, with the bonus of the chance to win our top prize of £5000! If you have requested tickets you will find two books included in the Newsletter.

This Spring we are asking our supporters to go green and recycle to help us raise funds! Through our partnership with Greensource Solutions recycling is easy.

• More tickets? Contact your local hospice. • Can I sell these? Yes please do! • Shall I return any unused tickets? Please recycle any unwanted tickets.

To date Greensource’s recycling and sales of print cartridges has raised a staggering £130,000 for CHSW!

You can send us small items in the post using the prepaid recycling envelope enclosed in this newsletter. For your work place we can supply a recycling box for your printer cartridges and other items, which will be collected regularly free of charge. Greensource also produces its own range of remanufactured laser cartridges, printeco, providing an environmentally friendly, cost saving alternative. £1 from the sale of each of these toner cartridges is donated to us!

Need a recycling box or more envelopes? Contact us!

In this edition Read on to find out about events, our world record attempt and your fantastic fundraising and the impact it has on families every day! Any inserts mentioned in this edition can be requested from your local hospice. P 4-5: Ryan’s Star Legacy P 6: In Memory of Daniel

Welcome / Get Involved

Get involved in 2014

P 7-9: Inspirational Fundraising P 10:

Our Sponsor a Nurse Appeal

P 11:

Corporate Fundraising

P 12-15: Events 2014 P 16-17: Precious Lives Atlantic Challenge P 18-19: Regular Giving

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

Don’t forget you can also play our Raise a Smile Lottery

Join us online /chsw1991 @chsw /chsw1991 3

The Starborn room was where we could shut ourselves off from the outside world and grieve in our own time, I used to call it ‘our oasis’.


See how your donations make a difference, visit us on an open day

Ryan’s Star Legacy Ryan’s family have been incredible fundraisers since Ryan died, turning their darkest of situations into light for other families who rely on our hospices. On October 12th 2013, 3 days before Ryan’s 18th birthday, Mum Mary hosted her third star ball celebrating his life. This raised £6,500 for CHSW taking the total Mary has raised for local charities to £34,000.

Ryan died in 2010 aged just 14 years old, his cheeky smile and wicked sense of humour shone through as he lived life to the full despite his disability, fulfilling his passion playing wheelchair football for Aston Villa up in Birmingham. At Ryan’s funeral his coach stood up to do a speech and said that he was destined to play for England when he reached 16!! After we lost Ryan we just knew we needed to take him to Charlton Farm. They were fantastic and helped us and my other son through the worst nightmare of our lives. They welcomed us with open arms and helped us prepare a fitting send off for our son. I now know that we were privileged to spend another week with our son after he died at Charlton Farm and we could visit Ryan anytime of the day or night in the Starborn Room. It was where we could spend time saying goodbye to our son in our own way.

Support us ?????? to help families like Ryan’s

As any parent knows this day should have been a huge day celebrating Ryan’s 18th. As he is no longer with us, I still wanted a celebration of his life with family and friends. As we approach the 4th anniversary of Ryan’s passing, or the day he got his wings, I feel inspired to raise much needed funds for the hospice. It helps me to thank them for their amazing support and how they helped me, my husband, and Ryan’s brother Warren through our darkest time. I feel proud as this is in memory of Ryan and I want his memory to live on.


In Memory of Daniel Dad Tony is undertaking 9 events in 2014, one to represent each week of Daniel’s life, to raise funds for charity. His inspiring plans include a 24 hour ‘squashathon’, a 1 mile walk, a London to Paris bike ride and a marathon. What an inspirational way to celebrate a special little boy. Join a challenge or donate Danielsheroes

Daniel was born in June 2013 with a rare genetic neuromuscular condition called Spinal Muscular Atrophy (SMA). Despite being a beautiful baby boy, Daniel was very weak from birth and was diagnosed with SMA after two weeks or so. When the diagnosis was delivered our lives changed forever. We already had a healthy baby boy called Alex and neither of our families had a history of genetic conditions. Daniel was diagnosed with SMA Type 1 which is the most severe and has a typical life expectancy of 9 months. It was evident to us that Daniel was severely weak and he passed away peacefully


in our arms at just 9 weeks old. The continued support from the hospice has been invaluable and we are forever grateful.

We’re committed to ensuring that Daniel’s short life is not in vain by completing these events in his memory.

Help us support families like Daniel’s with a regular gift page 19

Artistic fundraising Holywell School in North Devon joined forces with local artist Mark Fowler to create a collage which has been donated to CHSW. It currently hangs in West Wing at Little Bridge House for the families to enjoy and then will be taken to Mark’s gallery where it will be displayed and auctioned to raise funds for us.

A sweet surprise Residents in a road in St Leonard’s were in for a sweet surprise in December as enterprising friends and neighbours, 8 year old Martha and 10 year old Blain, hit on a plan to help children less fortunate than they are. Holding a cake sale in their front garden they raised a grand total of £165.17!

Inspirational fundraising

Inspirational Fundraising

Sat in a Field Festival This annual family-friendly festival took place near Cheddar, organised by Mike David and Marc Atkins.They decided to raise money for CHSW to support a children’s charity as the festival is family focused, raising a family-friendly £2000 to date!

Tea and trees Mr and Mrs Reg Hendy of Langford Lakes Christmas Tree Farm in Budville presented a cheque for £1809 to Wellington Friends Group. This wonderful sum was raised when kind Christmas tree customers made donations for the refreshments provided by the Hendy Family.

Iron clad fundraising Christopher Roberts, General Manager at the Falmouth Hotel, took on an Iron Man Challenge at the hotel’s leisure facilities - 322 lengths of the pool, followed by 112 miles on the bike, finishing with a marathon on the treadmill! A fantastic personal achievement raising almost £900!

Raising funds for us? Your local Community Fundraiser can help


Inspirational Fundraising Every day our supporters do something amazing to help our families. Our heartfelt thanks go to every one of you – here’s just a tiny selection of what you’ve been up to recently.

A Festival Run 250 runners took to the Glastonbury festival site in November for the first ‘Festival Run’ organised by Christopher Bond, Chris King, Julia Dukes and Mike Mayhew from Pilton. The entry fees from this 5k run raised £1500.

Plymouth’s Club Entertainers A mixed bag of fundraising by Dave Whitfield, a grandfather of a family from Little Bridge House, and his friends from the world of entertainment in Plymouth, included a Christmas CD, raffles and sponsored slimming raising a fantastic £5,322.73!

A Bath collection Our Christmas Stars Launceston Friends Group used two Christmas Memory Star Trees to raise funds – one in the centre of Launceston and the other at the St Mary’s Christmas Tree Festival. These special trees raised well over £240!

Thanks to the Rotary Club of Bath – Roger Stockley and John Vickery – who raised a very festive £7,000 collecting in Bath dressed as Santa. Ho Ho Ho!

A long walk for Emily 10 year old Emily Wakeham from St Mewan School in St Austell challenged herself to complete a 14 mile sponsored walk as she wanted to help children the same age as her. She raised an incredible £464.50.








Here are just a few words of thanks from our families.

We value the hospice and the fabulous staff there beyond words.

We love you, you guys and the other two hospices are amazing. We cannot do this without you, our journeys are hard, painful, and there are lots of tears and happiness but whenever we need you you’re there even if it’s on the end of the phone.

You helped us for the last 5 years and through the loss of our son. We couldn’t have gotten through it without you wonderful guys who go above and beyond and still continue to support us. Thank you, there are not enough words to describe how grateful we will always be.

Thank you for looking after my little girl and our family. Your help makes such a difference to our life.

You helped in making our stays full of memories and after our daughter passed in 2005 you still take the time to send anniversary cards. It’s lovely to receive them and you all will always have a place in our hearts.

The impact of your fundraising

What your fundraising means to our families

As a family who uses the hospice a huge thank you. Please know it makes a real difference to our lives.

Raising funds for us? Your local Community Fundraiser can help


Our Sponsor a Nurse Appeal We are asking businesses to join together to collectively sponsor a children’s nurse for one year. A great way for your business to get involved with a local charity and fulfil your Corporate Social Responsibility objectives.

Sponsor a


To find out more speak to your local Corporate Partnerships Fundraiser

When people say ‘I don’t know how you do your job’, to me, as a nurse, it is an absolute privilege to be able to care for these children and families. It costs around £30,000 each year to fund a nurse at one of our hospices. Could your company be one of thirty £1000 donors?


Contact our Corporate Partnerships Team to see how your Company can help

Our corporate supporters are so important to us, whether volunteering, donating, fundraising or giving Gifts in Kind,your support is invaluable.ThankYou. A vote from Lloyds Thank you to everyone who voted for us in the Lloyds Community Fund scheme, your invaluable votes saw us awarded £3,000 for each of our hospices! That’s a magnificent £9,000. With a special thank you to Lloyds Bank for the donation! Lloyds also donated hampers to all 3 hospices for the families to enjoy over Christmas. A playtime event Playforce in Melksham, created ‘Playface’, a spin off from Movember, and grew moustaches in support of us! Playforce has been supporting CHSW as charity partner since January 2013 including fancy dress, sweepstakes, bake offs, and fish and chip lunches. The team also recycle old print cartridges and donate clothes to our shops raising £992 to date!

Linden Homes’ jumpers! Staff at Linden Homes head office in Newton Abbot held a festive-jumper and cake sale day in December as part of their ongoing COTY partnership with us. This festive day raised £200 – fantastic! A mini donation! Ocean Mini, Falmouth have donated a Mini for CHSW to use. Colourfully branded, the car will be used by both the Fundraising Team and the Care Team at Little Harbour to support families and journey to fundraising events. An amazing donation, saving us money and helping us access more families who need our care.

Sponsor a Nurse / Corporate Fundraising

Corporate Fundraising

How to run an office! A team of 25 from EE Bristol led by Sara Jones ran the Bristol Half Marathon. Sara had already run the Bristol 10k for CHSW but recruited a further 25 runners to take part in the Half for us! The team effort raised an outstanding £10,845.43

Thank y u

Support us ?????? Read Ryan’s story on page 4, to see why your support is so important


As well as being great fun to take part in, our sponsored events form a vital part of our fundraising income!


210 miles

Get Involved, Get Sponsored! RIDE FOR LIVES PRECIOUS Ride for Precious Lives There are still a few spaces on this 210 mile cycle from Cornwall to Bristol. The buzz and camaraderie at this event is legendary! • 11th-13th July

ity char

The Walk for Precious Lives Rainbow Run

It’s a Charity Knockout

Get showered with colours of the rainbow in this crazy 5K run or walk – now in 3 locations!

Teams of 7- 10 take on colourful inflatables, costumes, props, water and bubbles for the most exciting and unique team building day out you’ll ever have!

• 8th June. Exeter Racecourse, Kennford • 21st June. The Downs, Bristol • 29th June. RAF St Mawgan, Newquay

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A 7k route around Charlton Farm near Bristol, navigating easy stretches with tougher climbs reminding us of the journeys that our families take as they navigate the highs and the lows of life with their sick child. • 16th August, Bristol

• 10th May. Paignton • 11th May. Truro

Pre-registration is open now, come and see the haven of Charlton Farm in a new light


Take on 220ft of rushing water down the canonteign falls, Dartmoor • 13th 14th September, Just £30 to enter

Events help support our Teen Weekends For many of our teenagers, the chance to stay at the hospice with other teenagers of the same age is a welcome opportunity. Your support allows us to offer dedicated teenage only weekends to these young adults, where they can do what teenagers do best –have fun! “On the Friday night the girls arrived and made their own dinner of pizza, before they settled down in the Teen Zone to watch a DVD, munching on popcorn and sweets!



Looking for the challenge of a lifetime?

Our tandem skydives take place across the South West throughout the year at Dunkeswell Airfield, Near Honiton and at Perranporth Airfield in Cornwall.

• The Mighty Zamezi Rafting Challenge: August 2014 • Trans Pyrenees Coast To Coast Cycle: September 2014 • Machu Picchu Trek: October 2014 • Mont Blanc Massif Trek: June 2015


• Dates and details online




Events - Get involved, get sponsored!


On Saturday the girls got up and did their hair, make up and nails and enjoyed a big breakfast of pancakes, bacon and maple syrup before heading out to ZA ZA BAZAR for all you can eat lunch! Sunday was a day of shopping, before heading back to the hospice for a roast.”




CHSW Running Club Whatever race you decide to join, if you are raising money for us you become part of our running club - a very special group of people who test themselves physically to raise a smile for our families. Visit the website for all our running opportunities- here are just a few to get you started!

Be part of our Running Club be the local • Plymouth Half – We are proud to places available! charity of the year! Free Gold Bond 5 Gold Bond • Virgin London Marathon - 201 Application open now! Sibling • Bristol Half – Raise money for our support at Charlton Farm for the half • Bristol 10k – A great training run and full marathons!

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What do I get as part of the Running Club? Advice and tips on training g pack A CHSW running vest and fundraisin of your local The opportunity to enjoy a tour ke hospice to see the difference you ma you on the day! An active cheer squad to encourage

Find details of all running events online

This year the Bristol 10k and Bristol Half marathon are raising funds for this crucial service at Charlton Farm. The constant demands of caring for a life-limited child mean parents can struggle to give siblings the attention they would like to. Often siblings also play an active part in their brother or We’ve loved sisters care. Our every minute! We sibling teams really appreciate that offer a range siblings are treated so well. We’ve had an of personalised amazing rest. support, enabling Thank you! siblings to just be children again as well as supporting them through the bereavement process.

Special Care for Siblings

Special Care for Siblings Hiya! We had a great time. Can’t wait to come back for more fun and games. We will be back very soon cuz that place is totally awesome!

I love my bedroom here so much that I will be really sad when we have to go home.

By taking part in either the Bristol 10k or Half Marathon and raising £1,500 in sponsorship runners could fund a week of sibling support at Charlton Farm, while £214 would fund a day’s support.



During my six years at CHSW’s Charlton Farm I have had the privilege of working with hundreds of children with lifelimited siblings. I am in constant awe of the way these children take on the huge hurdles that they face every day. It is their strength and determination which has inspired me to take part in the Bristol Half Marathon. Annie, a member of the sibling team.






Will you support this Atlantic-sized challenge? The ‘Precious Lives Atlantic Challenge’ is expected to begin on the 6th June 2014. You can be part of this record attempt whilst raising funds for us by matching the 3246 miles or testing your endurance for the 55 days of the row. By supporting the challenge, you are playing your part in ensuring that we can be there for families during their toughest of journeys, whenever they need us. Thank you. Fundraise in your office, club or group with the ‘Message in a Bottle’ fundraising poster game.

Match the 3246 miles that Darby & Elliott will row


3246 MOVES




Download posters, tools and fundraising resources to show your support for the challenge, online.

32.46 MILES


For full details on these ways to support call us or visit


Get involved 3246








GtoEdo EN Ais LL CH need you all s your choice

The . is raise sponsorship for your challenge : you Here are a few ideas to inspire

You can do anything as your challenge that involves 3246 of something or 55 days - just have fun and get sponsored.

55 days of giving up something you enjoy. 55 days of growing your facial hair. 55 days of running a mile each day.

Take on a 55 day challenge to test your endurance

We are looking for Corporate Sponsors, contact your local Partnerships Fundraiser for information

The challenges facing the children we care for, and their families, are enormous. The pressures that the rowers will find themselves under during this row will be great too. This tough challenge has synergy with the trials that our families face daily. Ellio t


ale ,

we Ro

Physically the pair will be pushed to the limits, having to continue the row battling possible injuries or illness. There is no respite to be had, much the same way as the families deal with constant physical demands of caring for their child, including moving or hoisting, the logisticsof transporting children with complexclinical needs and life-saving equipment toappointments or simply room to room at home.


When we’re at a low point, we think back to the families - the children what we’re doing is nothing in comparison.

The pair will face extreme sleep deprivation as they row continuously throughout the day, and 2 hours on/2 hours off throughout the night. Likened to the shift-sleeping so frequently experienced by our parents, the sleep they do have will be poor and there will be no let up as they face this challenge day after day with no option but to keep going.

A world record attempt for CHSW

Photo: Richard Austin

Facing the unexpected. Darby and Elliott cannot predict what challenges may come each day, in the blink of an eye conditions could capsize them, put them in danger of a collision with a bigger boat or find themselves hundreds of miles off course with no option but to keep going. The needs of the children can change or deteriorate just as rapidly, parents can suddenly face the very real loss of their child at any point any day and they have no choice but to deal with the situation.

This challenge will help us continue to provide very special care for families like Ryan’s. Page 4

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Our Legacy Ambassadors Jennie Noakes and Steve Gambling are two of our volunteers at Charlton Farm who kindly give up their time to support us. Along with their other volunteer work, they have recently become Legacy Ambassadors and are able to provide further information about leaving a gift in your Will to CHSW. Jennie and Steve are also able to offer a tour of Charlton Farm or a local talk, to show how legacies help us to support so many life-limited children and their families, across the region. If you would like further information about leaving a gift in your Will, please contact Charlton Farm and mention our Legacy Ambassadors or Rob Emery, our Legacy & Remembrance Officer at Little Bridge House.

A new hydrotherapy pool Hilton In The Community Foundation generously donated £25,000 towards an extension at Little Bridge House to house hydrotherapy pool facilities. Their generous support will match funding secured from NHS England’s capital programme. Works started at Little Bridge House in January and the new facilities should open to families in April. “This purpose built facility will provide a unique opportunity for specialist water based play and activities for the whole family at the hospice. Children and young people with life-limiting conditions and complex health needs will benefit tremendously from water therapy and multi-sensory play in the specially adapted, state of the art facility. At the same time it will offer the whole family a rare chance to enjoy playful activities together in the water, creating special memories to hold for the future. We are delighted that the Foundation is able to support us in making the most of short and precious lives in the South West.” Eddie Farwell

Every day little moments of magic happen at our hospices: fun, laughter, care, tears and memories made, thanks to your generous support. Messy play On Valentines Day the children at Little Harbour got busy in messy play making a Valentines Day card! Messy play is a great place to express emotions or find some quiet time. Family dining Sitting down together as a family, to a home-cooked meal, is something many of us take for granted, but which many of our families simply cannot do at home. When they are staying with us, we offer them this relaxing opportunity. Sibling days out Brothers and sisters are given very special care and attention through our sibling support teams. Fun, activities, a listening ear and specialist bereavement support is vital.

I would like to give a regular gift Mr Mrs Full name



Regular Giving form

Could you give a regular gift today?

Account no.


Date of birth

Branch sort code

Your address Name(s) of account holder(s)

Postcode Tel no.


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.

I wish to give £ each month starting on 16th of (month) (year) until further notice. Instruction to your Bank or Building Society Please 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


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.

Support us ?????? Remember to tick the Gift Aid box on the back of this form if you are a UK taxpayer


A regular gift makes a difference £10 a month

could help run our specially adapted mini buses, providing transport for family days out and stays at our hospices

You can make your donation worth even more when you

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

For every pound you give us, we get an extra 25p if you Gift Aid it.

Decide what you can give Complete this form (overleaf) Return it FREEPOST to: Children’s Hospice South West Freepost (SWB30894) Barnstaple Devon EX31 2ZZ You won’t need a stamp but if you choose to use one you’ll be saving valuable funds. Thank you.

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).

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

Registered Charity No. 1003314 Registered in England No. 2620879

CHSW Newsletter - Issue 1 Spring/Summer 2014  

In this edition find out about events, our world record attempt and your fantastic fundraising and the impact it has on families every day!

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