Daniel Sexton – South East; Hannah Gray
Sat, July 11, 2026 at 6:07 AM UTC
A five-year-old boy with a life-limiting condition broke his arm falling trying to reach a toilet in his family home which his parents say remains unsuitable
Sid, from Yalding, lives with spinal muscular atrophy type 1 (SMA1), a genetic condition that affects movement and muscle strength
His parents, Sophie and Aden, said they have been trying for more than a year to secure a Disabled Facilities Grant for the £138,000 adaptions needed to make it their home safe
Maidstone Borough Council said it understood how important the adaptations were and was working with the family
Sid was diagnosed when he was four months old and his condition has left him with a curved spine and significant mobility difficulties
His parents said everyday tasks require constant support
Aden said: “He needs help to sit up to have a drink
“If he wakes up, he’ll need help to go to the toilet
“He needs help coming down the stairs, up the stairs.”
The family said the proposed adaptations would make it easier for Sid to move around the property and access his bathroom and bedroom
Sophie said doctors had warned them he might not live beyond the age of two
“It has been a really difficult time,” she said
She said securing support for her son had been an ongoing struggle
“Everything along the way has been such a fight,” she said
“A fight, to get equipment and fight to get the care that he needs, the fight to get access to different treatments and therapies.”
Although treatments are available for SMA, there is currently no cure
A spokesperson for Maidstone Borough Council said: “The council is working with the family to progress disabled facilities grant applications and support them in accessing all available funding.”
Follow BBC Kent onFacebook, onX, and onInstagram. Send your story ideas tosoutheasttoday@bbc.co.ukor WhatsApp us on 08081 002250
