'A safe space for William to play would change his life': family launch fundraiser for little boy with rare genetic condition

William Toole, aged 3, was born with a rare genetic condition called Sotos Syndrome

A fundraising campaign is currently underway to provide a little boy with a rare genetic condition a safe place in his home where he can play.

William Toole, aged 3, 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).

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William has had a tough few years and has undergone numerous surgeries, including re-implantation surgery for his kidney reflux, and is currently awaiting a date for cerebral fenestration surgery.

A fundraising campaign is currently underway to provide a little boy with a rare genetic condition a safe place in his home where he can play (Photo: Lucy Toole)

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

However, although when William falls he doesn’t tend to react due to his high pain threshold, he can cause considerable damage to himself, and cannot explain to others if he’s fallen over and is hurt due to him being none-verbal.

‘People’s generosity and kindness has been overwhelming’

William’s mum, Lucy Toole, launched a fundraising campaign in order to be able to build her son a safe place in their home for him to play.

William has undergone numerous surgeries, including re-implantation surgery for his kidney reflux (Photo: Lucy Toole)

The family’s home currently consists of a lounge/dining area and a separate kitchen, but they are hoping to raise money to build an extra room which William can use without causing himself any harm.

The fundraising page explains, “Unfortunately we currently can not afford to carry out the building work on our own so have set up this page hoping for some help.

“We need a ground floor extension and have had a quote for approximately £20000 to build a conservatory with direct access to the garden which is William’s favourite place.

“Having a safe space for William to be able to play would change his and our lives, he could hopefully gain some independence.”

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, Ms 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 ‘Help give William a safe space at home’ fundraising page.