Fundraiser for Marton toddler with rare genetic condition Sotos Syndrome

A fundraising campaign aims to give a Marton boy with a rare genetic condition a safe place in his home to play.

Wednesday, 28th April 2021, 7:00 am

William Toole, three, who lives off Pedders Lane, was born with a rare genetic condition called Sotos Syndrome, which is caused by a gene mutation, and also suffers from hydrocephalus (accumulation of cerebrospinal fluid in the brain), severe kidney reflux, and hypotonia (decreased muscle tone).

William has had numerous operations, including re-implantation surgery for his kidney reflux, and is waiting for cerebral fenestration surgery.

One of the traits of Sotos Syndrome means William has a very high pain threshold but can fall easily and is unstable on his feet.

Sign up to our daily newsletter

The i newsletter cut through the noise

William Toole, three, with mum Lucy. William was born with a rare genetic condition called Sotos Syndrome, and Lucy hopes to build him a safe space to play in their home. Photo: Lucy Toole

He can cause considerable harm to himself and cannot explain to others if he has fallen over and is hurt due to him being nonverbal. He and his family communicate in Makaton sign language.

William’s mum, Lucy Toole, 37, who cares for William full-time, launched the fundraiser.

The family’s home, where William lives with mum Lucy, dad Bill, 35, who works for an air conditioning firm, sister Lottie, four and brother Jack, 19, currently consists of a lounge/dining area and a separate kitchen.

But Lucy and Bill are hoping to raise money to build a conservatory to be used as a makeshift soft play area.

William Toole. Photo: Lucy Toole

Lucy said: “Unfortunately we can't afford to move to a bigger house, so we're hoping we can raise enough money to make William his own little space in the house.

“We need somewhere I can keep a close eye on him and I know he will be safe, and which leads out onto the garden which is William’s favourite place to be.

“I have to watch him like a hawk because he can't tell me if he's hurt himself, and he can't feel it if he does. We want to be able to give him some independence to play at home safely.”

The fundraising campaign has reached £15,165 of its £20,000 goal, with people also donating to the appeal after Strictly Star and former Emmerdale actress Gemma Atkinson posted about William’s story on her Instagram account.

In response to people interacting with William’s story and donating to the campaign, Mrs Toole said: “It’s incredible. People’s generosity and kindness has been overwhelming.

“We are so close to being able to make our dream for William a reality.”

To find out more about William’s story or to make a donation, visit the fundraising page here.