A Westbury family has launched a fundraising campaign to help transform their home and give their young son the comfort and care he needs.
Three-year-old Drae was born with TBCK syndrome, a rare and life-limiting genetic condition that affects his brain and nervous system. He cannot sit up, walk or support his own head and lives with epilepsy, scoliosis and severe muscle weakness.
Despite this, his mum Rachel Mead describes him as “the happiest, most loving little boy, who fills our lives with so much joy.”
Caring for Drae requires round-the-clock support, specialist equipment, and adaptations to the family home. While the NHS provides some help, many essentials fall outside its scope, so Rachel and her family have launched a fundraising campaign to help meet those needs.
“We are raising funds to give Drae the care, equipment and experiences he deserves,” said Rachel. “Safe spaces at home, specialist equipment or days out as a family can make a world of difference and help us create precious memories together.”
A series of fundraising events have been planned starting with Drae’s Spooktacular Party on Saturday 1st November, at Players on the West Wilts Trading Estate with pumpkin carving, games and Halloween fun.
This will be followed with Drae’s Christmas Wish on Saturday 13th December, promising live music, fairground rides, stalls, pony rides, face painting, marshmallow toasting and a silent auction.
Local people are already rallying round, donating items and offering support. “Every donation, big or small, goes directly towards Drae’s care and making the most of the time we have together,” added Rachel. “Drae’s condition is progressive and we know his life will be short – we just want to make his time as happy, safe and comfortable as possible.”
For more details on the fundraising events and how to donate or get involved visit https://www.gofundme.com/f/help-us-to-help-drae-stay-safe
