A father-of-two is taking on the London Marathon for his friend's daughter, who has a genetic condition so rare only 15 other cases are known worldwide.

Nine-year-old Winnie Heath from Saffron Walden is blind, unable to walk and has very limited speech, and also has epilepsy and problems with her heart and kidneys.

She was recently diagnosed with a variation of the CDK8 gene, and her parents Fiona and James are fundraising to buy equipment and therapy for Winnie to help her communicate and gain more strength and movement.

Saffron Walden Reporter: Chris Jakubowski with daughter MaiaChris Jakubowski with daughter Maia (Image: Tree of Hope)

Family friend Chris Jakubowski, 39, is hoping to beat his personal best of two hours and 42 minutes to help raise funds for Winnie.

Chris, who lives in Chelmsford and works as a financial analyst, 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."

Winnie's parents Fiona and James are both clinical psychologists, and have two other daughters, 11-year-old Molly and seven-year-old Wanda.

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."

Winnie has already made "amazing" progress through physio, and is now in need of an off-road wheelchair and a trike to help her continue.

Fiona said: "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."

The family is hoping to further adapt their bungalow to allow Winnie easier access to the rooms and garden.

They also want to get Winnie an auditory scanning devise to help her communicate - but she will need substantial therapy to get to the point of being able to use 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!" Fiona added. 

"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."

Winnie and her family are being supported by children's charity Tree of Hope, which helps families fundraise for children with healthcare needs which the NHS cannot support - as well as supporting donors and offering gift aid.