A five-year-old boy living with a severe genetic condition has sustained a broken arm at his family home in Yalding, Kent, which his parents describe as unsuitable for his needs. Sid, who has spinal muscular atrophy type 1 (SMA1), fell while attempting to reach a toilet, an incident his parents believe highlights the urgent need for home adaptations that have been delayed for over a year.
Sid was diagnosed with SMA1, a condition affecting movement and muscle strength, at four months old. The condition has resulted in a curved spine and significant mobility challenges, necessitating constant support for everyday activities. His father, Aden, explained that Sid requires assistance for basic tasks such as sitting up to drink, going to the toilet, and navigating stairs.
His parents, Sophie and Aden, have been campaigning for more than a year to secure a Disabled Facilities Grant (DFG) to fund crucial adaptations to their home. The proposed modifications, estimated to cost £138,000, are designed to enhance Sid's independence and safety by facilitating easier access to his bathroom and bedroom within the property.
Sophie shared the ongoing difficulties the family has faced since Sid's diagnosis. Doctors had initially warned them that Sid might not live beyond the age of two, making every day a testament to his resilience. She described the process of securing support for her son as a continuous battle, encompassing everything from essential equipment and care to access to treatments and therapies. While treatments for SMA are available, there is currently no cure.
In response to the family's situation, Maidstone Borough Council acknowledged the importance of the required adaptations. A spokesperson for the council confirmed that they are actively working with the family to process the Disabled Facilities Grant applications and assist them in accessing all available funding options.