Parents of Hitchin girl with rare syndrome back fundraiser

Hanneke Van Zweden, Alex Williams, (Ella's father), Titus Mars, Liesbeth Laan, Ella Williams, Joran

Hanneke Van Zweden, Alex Williams, (Ella's father), Titus Mars, Liesbeth Laan, Ella Williams, Joran Meems, Alex Meems and Kelli Windebank, (Ella's mother) - 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.

Alex Meems cycles through Hitchin

Alex Meems cycles through Hitchin - Credit: Archant

Ella Williams was diagnosed as a baby with the extremely rare Marshall Smith Syndrome (MSS).

Liesbeth Laan cycles through Hitchin

Liesbeth Laan cycles through Hitchin - Credit: Archant

The condition causes advanced bone maturation, failure to grow and gain weight appropriately, and severe breathing problems.

Alex Meems, Liesbeth Laan and Joran Meems cycle through Hitchin

Alex Meems, Liesbeth Laan and Joran Meems cycle through Hitchin - Credit: Archant

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.


You may also want to watch:


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.

Most Read

“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

Become a Supporter

This newspaper has been a central part of community life for many years. Our industry faces testing times, which is why we're asking for your support. Every contribution will help us continue to produce local journalism that makes a measurable difference to our community.

Become a Supporter