Parents of Hitchin girl with rare syndrome back fundraiser
- Credit: Archant
THE parents of a girl who suffers from a syndrome which affects just three other people in the UK have been backing a campaign to raise awareness of the condition.
Ella Williams was diagnosed as a baby with the extremely rare Marshall Smith Syndrome (MSS).
The condition causes advanced bone maturation, failure to grow and gain weight appropriately, and severe breathing problems.
Eleven-year-old Ella’s parents Alex Williams and Kelli Windebank, who live in Hitchin, have been backing a fundraiser organised by a group of Dutch people.
The group – who have called themselves the Tour de Cure team – are cycling the 313 miles between the four affected UK families’ homes in order to raise awareness.
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On Tuesday morning, they set off from Alex and Kelli’s home in St Michaels Road and were guided along to Barton-le-Clay by Alex, 33, and his father.
They have raised around 10,000 euros so far – double their target – which they will present to an Oxford professor who is researching the condition, at the end of their challenge.
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“All our friends and family have donated – everyone’s been really supportive,” said 31-year-old Kelli.
“We’ve been pleasantly surprised and the fundraising target has been smashed.”
Ella was diagnosed with MSS when she was around three months’ old after undergoing tests at Great Ormond Street Hospital.
The youngster, who now attends Greenside School in Stevenage, was diagnosed almost by chance, after a doctor visiting the hospital noticed an x-ray showed her bones were similar to that of a four-year-old.
After being given information on websites, her parents got in contact with other families whose children had also been diagnosed with MSS.
That was how they eventually met cyclist fundraisers Liesbeth Laan, Hanneke van Zweden, Titus Mars, Alex Meems and Joran Meems.
“Worldwide even, there’s only a handful of people affected,” added Kelli.
“We managed to get in touch with someone from Holland (with the condition) who were already in touch with another family in America, and it all just went from there.”
To donate to the cause, visit www.justgiving.nl/en/mss-uk-tour-de-cure