Woman embarks on gruelling run to raise awareness of rare genetic disease
PUBLISHED: 16:57 20 May 2018 | UPDATED: 16:57 20 May 2018
A woman is taking on ambitious challenge to raise awareness of a rare genetic disease which claimed the life of her close friend’s son.
In February 2017, James Thorndyke died just five days before his first birthday of Severe Combined Immunodeficiency (SCID).
Since then James’ parents, Susie Ash and Justin Thorndyke, from Forncett St Mary, near Diss, have been campaigning in their son’s memory to raise awareness of the condition and to make screening for the disease normal practice in the UK.
Now, a close friend of the family, Louise Saunders, is helping the couple in their mission by taking on a gruelling 20-mile run help raise awareness of the campaign and money for the East Anglia’s Children’s Hospices (EACH), which supported the family during James’ last few days.
On May 27 the 28-year-old, who describes herself as “not really a runner”, will set off from her home in Tharston, near Long Stratton, on a 20-mile route which will take her through neighbouring villages before returning to her home, where she will be greeted by well-wishers and friends.
Mrs Saunders explained her reasons for taking on the challenge: “I thought I would like to something for Susie and Justin just to keep James’ memory going and for EACH.”
Hoping to raise £1,000 for the hospice, Mrs Saunders has already surpassed her fundraising goal and has been blown away by the support she has received.
“I’m a little bit worried about the run, but I’m just overwhelmed with the support and the money everyone has given me to do it and I’m looking forward to see how much I have raised,” she said. “I’m just chuffed.”
James’ mother, Susie Ash, said: “It means so much to us.
“We have been so determined that James would not be forgotten.”
“Obviously I know we cannot help our James, unfortunately the awareness wasn’t there.
“But awareness is absolutely vital, for normal people who haven’t heard of the condition but also doctors.
“If it can save one more life then it’s worth it, James’ memory can help others.”
To donate to Louise Saunders’ fundraising campaign, visit www.justgiving.com/fundraising/louise-saunders16