A music event and football match featuring ex-professional footballers has raised thousands for a Westbury boy with an extremely rare condition.
The event took place at Westbury United FC and raised over £6,000 for home adaptations for Drae Mead-Strong, a four-year-old boy who has two variants of TBCK-related ID syndrome – a rare, life-limiting condition.
“It was such a lovely day, the weather was fab, the match was brilliant, live music was excellent, so many people showed up to support us,” said Rachel, Drae’s mum.
“Everyone said what a brilliant day they had. It really was the best day. I wanted to do it all again.”
Drae’s condition affects his brain and nervous system and means he cannot sit, walk or support his head. He also lives with epilepsy, scoliosis and severe muscle weakness.
His home adaptations cost between £70,000 and £90,000. He is entitled to £30,000 from the Disabled Facilities Grant (DFG), but his family have to fundraise for the rest of the money.
“We are so thankful for everyone that gets involved and turns up to support Drae,” said Rachel.
To donate to Drae’s fundraiser, visit https://www.justgiving.com/crowdfunding/dazsrock4drae
Below left: Rachel and Drae with Daz Sims, who is helping fundraise. Below right: Kids with Bluey
