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matters
WHAT’S IN THIS ISSUE
Spring 09
COVER story • Fraser
NEWS from our team • CHASE goes wild
Fraser’s story Iain Russell talks about the support that CHASE gave him and his wife Jules during the life and death of their little boy Fraser.
• A day in the life… • Thank you Millie-May • New Team Member
LEGACIES and friends • Flowers, gifts or charity? • Eagle switch on our lights • CHASE Royal Patron visit
PEOPLE like you • Loseley 10k • Schools • Corporates
CHASE calendar • CHASE Open Gardens • Just happened… • Events…
Fraser on a happy day out
“CHASE enabled me to enjoy my short time with Fraser. I mean Fraser made it pretty easy by just being him, but what with a stressful job and all the care Fraser needed, there were definitely tensions.” Iain Russell
Fraser was transferred to the special care baby unit hours after he was born, and then to the neonatal intensive care unit at St Thomas’ hospital in London.
During daylight he needed some kind of intervention every 30 minutes, and during the night he would wake us up typically twice and sometimes more.
He was not expected to survive the day but he had other ideas. He was then expected to be in intensive care for weeks if not months but before he was two weeks old we were back home. However, doctors told us he had a metabolic condition which meant very little to us at the time. Over the weeks and months we learnt more about it, how it affects children in very different ways and that Fraser’s life expectancy was not going to be high. Fraser required constant care, 24 hours a day and 7 days a week. 1 5
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Supporting families across the region Since CHASE began its work ten years ago, over 752 families and 774 life-limited children have been supported by our care service. Today CHASE is supporting 300 families including 58 bereaved families.
Elaine Conisbee
“A key part of the CHASE service will always be the help that members of our community care team provide to families in their own homes across SW London, Surrey and Sussex. “Between July and the end of September last year we made 680 visits to families at home, giving them a much needed break. “CHASE has responded to a recent increase in the need for bereavement support by
employing a second counsellor as well as setting up a small team of qualified volunteers who are assigned to bereaved family members to offer help and support. “Over the past year CHASE has hosted many fun events for the children and their families as well as organising activities for the various support groups. “Thank you for your continued support of CHASE which ensures all these developments and improvements are able to go ahead.”
Elaine Conisbee – Head of Clinical Services
“Fraser’s story” continued… We found CHASE when Fraser was 10 months old. I remember feeling very proud when Fraser was accepted at CHASE and then feeling very sad that it meant they felt he was sick enough to qualify.
Fraser on Daddy’s shoulders
Fraser with music therapist Vicky Kammin
Moving forward
Fraser loved it there. He particularly enjoyed music therapy and hydrotherapy and would get excited any time we drove up the entrance way. They supported us in so many ways during the two and a half years we had with Fraser and gave us so many happy memories.
I had thought about the idea of a charity bike ride when Fraser was alive but with the amount of care he required we simply couldn’t commit to the training. I had spoken to my neighbour Ciarán and Rich, one of Fraser’s godfathers and we had agreed when the time was right, it would be a great challenge. Five other guys who were close to Fraser also said they wanted to come along, so we had a team of eight.
“I firmly believe that CHASE enabled me to survive the experience and still have a job and a marriage at the end of it.”
Three thousand miles of training each later, we were ready to go. We set off from Land’s End on 29th June and were in John O’Groats 5 days and 874 miles later.
Even in that final week, when we’d taken the heart-rending decision to leave the hospital and go to CHASE for “end of life care”, Fraser’s eyes sparkled as he recognised we were approaching and he kicked his legs a little.
It was an incredible challenge - not just for the riders, but also the support party. We could not have done it without them and I had not expected what a sense of pride I would get from being involved in such a team effort.
We had a wonderful last few days together as a family. The staff looked after us and Fraser enjoyed a few final music therapy and hydrotherapy sessions.
The ride has raised over £50,000 for CHASE.
He said his goodbyes to close friends and family and peacefully slipped away on the Friday evening snuggled between us on the bed at CHASE.
Anyone inspired by the ride can get more details or make a donation at www.raceforchase.co.uk.
Race for CHASE
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NEWS from our team
CHASE goes Wild! CHASE has teamed up with Wildlife Aid, run by Simon Cowell. Wildlife Aid, as seen on TV’s ‘Wildlife SOS’, is one of the UK’s largest wildlife rescue, rehabilitation and release centres.
Simon Cowell with Sian
As well as many nail biting UK rescues, Simon will be seen on TV in many exotic overseas locations wresting with alligators, swimming with manatees and standing face to face with a rather large black bear!
Exciting stuff! He will soon be visiting Christopher’s to talk to children about his adventures and the importance of protecting wildlife in all its shapes and forms. Simon says: “Young people love to hear about animals and wildlife and we are very happy to be working with CHASE – visiting the children you support and giving them a real insight into our work with wildlife and the environment.” Visit their website at www.wildlifeaid.org.uk
Thank you Millie–May
A day in the life... of a bereavement counsellor Q: What is your job at CHASE and what does it involve? A: Individual counselling to any member of a family supported Heather Tilley by CHASE – pre and post bereavement. I also lead a number of therapeutic groups including siblings’ days for brothers and sisters aged 5-15, Grandparents Days twice a year, a bereaved parents group and a bereaved siblings group. In addition to this I manage a team of seven volunteer bereavement counsellors and provide training around working with families for the care staff at CHASE, our volunteers and external professionals. Q: What do you like most about your job? A: No two days are the same. Every day presents a new challenge. And I particularly enjoy working directly with the families.
Paediatric consultant at Christopher’s
Millie-May with her sister Ruby
To date, the CHASE Christmas Appeal has raised over £29,000. The appeal, which featured the story of Millie-May, a five year old girl supported by CHASE asks supporters to send back a Christmas tree decoration in the shape of a pink welly boot with a message for Millie together with a donation. Millie-May’s Mum, Emma said: “On behalf of me and my family, I am really touched and blown away by the wonderful and kind wishes that people have sent in for the Christmas appeal. We really appreciate all the lovely comments and decorated welly boots that people have sent in with their kind donations. It means so much that people care and want to help, not just us as a family but the other families being supported by CHASE as well.”
An important development for CHASE is the employment of a Consultant in Paediatric Palliative Care – a joint post with the Royal Marsden Hospital. Dr AK Anderson will develop our service in assessing and supporting children with symptoms that are complex and often difficult to manage. Dr Anderson said: ‘I’m thrilled to be working alongside a great and welcoming team at CHASE. This job is a wonderful example of how the voluntary sector and the NHS can work together to continually innovate services to children. I look forward to meeting and getting to know everyone.
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LEGACIES & friends
Legacies Flowers, gifts or charity? CHASE is grateful to those people who ask friends and relatives to remember their loved ones with a donation to charity instead of flowers, as a meaningful tribute to their life. CHASE is also fortunate to receive donations made in lieu of gifts at a special occasion. When CHASE Patron Max Clifford and fiancée Jo Westwood announced their engagement – they held a celebration party but instead of gifts for themselves, they asked their guests to buy something special for the children supported by CHASE for Christmas. Max said “We didn’t want any presents, just wanted people to give something to CHASE”. Jo said people had been incredibly generous. “I was quite overwhelmed when I saw what was there.” Max Clifford and fiancée Jo Westwood
To find out more please contact Ian Davies on 01483 447756 or email ian.davies@chasecare.org.uk
HRH The Countess of Wessex visits us!
Eagle Radio switch on our lights! A team of volunteers from 96.4 Eagle Radio used their artistic talents to cover Christopher’s with decorations at Christmas! Kim Robson, Presenter of the Eagle’s afternoon show said: “All of us at Eagle wanted to help a great cause and have some fun in preparation for Christmas. Putting the Christmas decorations up at CHASE was a great choice. It’s worth it just to see the smiles on the children’s faces as they get into the festive spirit.”
The Team from Eagle
Trust Support The Countess of Wessex meets Madeleine (8) and her parents Katherine and John, from West Ewell.
CHASE Royal Patron HRH The Countess of Wessex visited us just before Christmas when she met with families and spent time talking to all the children. The Countess commented on the huge number of changes and improvements that had been made at Christopher’s since she performed the official opening in 2002.
CHASE is grateful to the many Trusts and Foundations who have given support during the past year, including: • Children In Need • The James Tudor Foundation • The Peter Harrison Foundation 4
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PEOPLE like you SCHOOLS
Supporting CHASE is a great way for schools to help us raise the money we need to continue helping families with life-limited children.
Loseley 10K
St John’s at Leatherhead and its feeder school Downsend preparatory school at Ashstead are two of the latest schools on board with CHASE as well as newcomer Danes Hill School in Oxshott.
The third Loseley 10k and 4k fun run in November raised over £38,000. The runs attracted a phenomenal participants this year.
If your school would like to get involved, contact our fundraising team on 01483 454213 or email fundraising@chasecare.org.uk
Organised by CHASE in conjunction with All About Triathlons – it was the best supported yet, as the event gains momentum and popularity in runners’ calendars.
CORPORATES
Alterspace dig deep for CHASE
A warm up before the race organised by Jo Dandridge, instructor at Fitness First in Godalming, really set the carnival atmosphere for the day.
Jo Dandridge leading the warm up.
Alterspace – John Scott, Paul Norris, Don Bullen from CHASE and Dan Wells
Alterspace building services from Leatherhead are digging deep for CHASE by project managing a complete makeover of the sensory courtyard at Christopher’s. The enhanced courtyard will offer an amazing range of sensory experiences which will be completely accessible to all children and teenagers - imagine how much fun they will have! Getting into the Christmas spirit, Alterspace traded in their overalls for some festive outfits while working on the courtyard during December. They hope to have the finishing touches completed in early 2009. CHASE deputy CEO Bridget Turner said: “We’re delighted that Alterspace has chosen to support CHASE with its work on the
sensory courtyard which they are undertaking at no cost to us. They will also continue their support over 2009 and beyond with many exciting ideas for fundraising and volunteering. The funding to purchase the specialised equipment for the sensory courtyard has been generously donated by the Armitage family who have been supported by the CHASE care service. Iain Armitage has organised London to Paris cycle rides for CHASE over the past three years which collectively raised £230,000, £10,000 of which has gone towards the courtyard project. If you know a company that would like to become part of the CHASE Corporate family please contact Natalie or Elena on corporate@chasecare.org.uk
Contemporary art raises £80K CHASE Contemporary Art Exhibition, at the Royal College of Art in November raised £80,000 on one night. This was the ninth such event organised by the Chelsea Friends of CHASE Group. Group chairman Rachel Hampson said: “Next year will be a milestone in the history of this event as it will be the tenth exhibition. If anyone is interested in supporting the event in any way, either personally or corporately, then we would be very happy to hear from them. Anyone interested should contact us via CHASE on 01483 454213.” 5
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CHASE calendar
CHASE Open Gardens 2009 Celebrity gardener Alan Titchmarsh is endorsing the CHASE Open Gardens Scheme in June this year.
We will also need volunteers to help garden owners with various tasks including collecting donations at the gate, car parking and refreshments.
CHASE is delighted to welcome Alan Titchmarsh to this first CHASE Open Gardens Scheme and we are appealing to all those green fingered experts out there who have beautiful gardens, large or small, to open them to the public to raise money for us.
Email us at opengardens@chasecare.org.uk
Up, up and away The skies over Wisborough Green were filled with colourful hot air balloons for the annual balloon festival organised by the Wisborough Green Friends of CHASE group with Brian and Cecilia Smith and the Wisborough Green Balloon Club, which raised £8,500.
Details of all gardens to be opened and the dates will be published on our website.
IDEAS
Lets lunch for CHASE!
The event was tinged with sadness this year following the death of David Longden who was a leading light on the Wisborough Green Friends Group and heavily involved with the balloon festival and other fundraising events. David was an avid supporter of CHASE and had volunteered his time and services to CHASE for several years. His widow, Patsy has continued helping friends on the Wisborough Green Friends Group, who expressed their thanks to the many event sponsors.
Events...
Why not make a lunch in March count for CHASE?
These are just some of our events coming up. For details of all these and other events visit our website: www.chasecare.org.uk/events
March 26 - Puttenham Golf Day
February 10 - Open Evening at Christopher's
If so, PLEASE RUN FOR CHASE!
February 11 - Open Day at Christopher's
To find out more about joining our team contact Tina Aston at CHASE tina.aston@chasecare.org.uk
February 14 - Romancing with the Stars, Valentine Ball – Madame Tussauds, London
September 16-23 – “Jolly Good” Motor Tour from Lake Geneva to Monte Carlo
April 16 – Do you have a place in the Flora London Marathon 2009?
Simply choose a date that suits you during March and invite family, friends or colleagues over for lunch – to raise money for CHASE. We can give you some special recipes to try, donated by celebrities! Sign up for a free fundraising pack crammed with ideas to make your event a real success. Contact Michelle Nippress at CHASE fundraising office for details on 01483 454213 or email letslunch@chasecare.org.uk
If you want to find out about volunteering for CHASE, call Erica Quaile on 01483 230960. To send a donation call 01483 454213 or give online at www.chasecare.org.uk/donate. CHASE matters is produced by the CHASE Public Relations and Communications Department. Any comments or suggestions are welcome at: CHASE, Loseley Park, Guildford, Surrey GU3 1HS. Telephone 01483 454213, fax 01483 454214 or email media@chasecare.org.uk
Registered Charity No. 1042495
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