A Chelmsford father of two is taking on the London Marathon for nine-year-old Winnie Heath who has a genetic condition so rare only 15 other cases are known worldwide.
Financial analyst Chris Jakubowski, 39, is hoping to beat his personal best of two hours 42 minutes to help raise funds for Winne Heath, 9, the daughter of a family friend he has known since he was a child.
Winnie, from Saffron Walden, had to be resuscitated at birth and several times within her first 24 hours. She is completely blind, unable to walk has very limited speech. She also has problems with her heart and kidneys and has epilepsy. However she is bright and intelligent, loves to be to read to, to listen to music and being outside.
Winnie lives with mum Fiona Eldridge, 47, a clinical psychologist at Addenbrooke’s Hospital in Cambridge, Dad James, 47, a clinical psychologist at Broomfield Hospital in Chelmsford, and sisters Molly, 11, and Wanda, 7.
Winnie was recently diagnosed with a variation of the CDK8 gene. The family and their supporters are fundraising to buy equipment and therapy for Winnie to help her communicate and to gain more strength and movement.
Fiona said: ‘My husband and I love the NHS and have worked for it all our lives, and we are also well aware that we owe Winnie’s life to it. However provision for physio and speech and language therapy is very limited for children like Winnie so we are having to top this up privately. We currently pay £225 per week which is all we can afford but heartbreakingly this is half of what the professionals tell us Winnie needs to sustain her progress.
‘Physio has done her the world of good, she initially couldn’t move half of her body and now she can sit and stand for short periods with limited support. This is amazing progress and if this continues there is a very real chance that Winnie will be able to transfer independently which would mean an enormous difference to her quality of life as she gets older.’
‘Last year a local benefactor and charity helped us to purchase a new wheelchair as she had outgrown her last one and friends of ours ran the Edinburgh marathon too to help us to raise money for therapy costs – we are so grateful for both.’
‘As Winnie grows there is always a need for new equipment and always something which needs replacing and like everything at the moment, costs have skyrocketed. ‘She loves being outdoors and needs a new off-road wheelchair, as well as a trike to support her physio. We have moved to a bungalow to ensure we can stay on the same floor as her but there are still thousands of pounds of adaptations that we need to do to enable her to access the rooms and garden better’.
‘We are also hoping to get Winnie an auditory scanning device so she can better communicate with us, but she needs a lot of therapy to be able to get to the point of using it.’
‘Winnie is sociable and intelligent with her own likes and dislikes – she loves Roald Dahl and Julia Donaldson stories and Lionel Richie’s music! We want to support her in every way we can. We are so grateful to Chris for helping us to fundraise by running the marathon.’
Chris said: ‘This will be my third London Marathon – I was given a free place because of the time I achieved last time. So it made perfect sense to use it to help raise funds for Winnie. Fiona has been a close friend of my sister Lucy’s since childhood. I’m a dad of two girls and have huge empathy for Fiona and her family and their constant efforts to do their absolute best for Winnie. I’m delighted to be able to help with fundraising in this way.’
The family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Winnie with healthcare needs where the NHS can’t support and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Tree of Hope Head of Marketing and Family Support Georgina Lowry said: ‘We’re really pleased to be supporting Winnie’s fundraising. We wish Chris the best of luck with the marathon and are here to support however we can.’
To sponsor Chris visit https://www.justgiving.com/fundraising/Marathon4winnie
To donate to Winnie’s fund, visit https://www.treeofhope.org.uk/transform-winnies-life/
