However, I met an incredible lady called Steph last year at a 24hour run around Cirencester Park who doesn’t have quite such a simple life: Steph has a full time job (and has been stationed in Afghanistan), her husband is away in the armed forces much of the year, is running the Marathon des Sables as well and has two toddlers (she calls “her little terrorists”). One of her children Oscar (who turns 2 in April) has Goldenhar syndrome which is a very rare, debilitating condition covering a wide range of craniofacial issues. Oscar suffers with bi-lateral hearing loss, poor vision, breathing problems and gastric issues – he can only take pureed food due to choking. He needs operations to correct his mouth and ears and care to ensure development of motor skills.
Steph is one heck of an inspirational lady.
Steph has taken on even more by starting a charity called Golden Children – which will be officially launched on Sunday 8th April – to support children, and their families, affected by craniofacial syndromes. The charity will help fund research at four centres in the UK, support children through expensive hospital surgery and care - providing grants for vital equipment for individuals, and provide an open social platform to share knowledge. Because conditions such as Goldenhar are so very rare the charity wants to give families access to information, signpost medical support and considerations, but also put a positive spin on the condition – Steph says that Oscar is the happiest child she knows. There is no other charity doing this work.
Golden Children is 100% funded by Marathon Des Sables participants.
I know all of you will already support wonderful charities which are close to your hearts, but to be clear: you aren’t funding me to do the race and every penny you can spare will make a direct and massive different to Oscar and other children like him who need help.
- John Adams
- William Cussans
- Rob Adkin
- Ed Bradnock
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