Hi I’m Rachel, Our beautiful boy Drae was born with a rare and life-limiting condition called TBCK syndrome. This syndrome affects his development and everyday life in so many ways – he cannot sit up, walk, or support his own head, and he needs full-time care. Despite all of these challenges, Drae is the happiest, most loving little boy, and he fills our lives with so much joy.

Drae’s condition causes his brain and central nervous system to break down, he suffers from many forms of epilepsy, severe hypotonia, nocturnal hyperventilation, scoliosis, femal ossification, CVI, dysphaghia, and more, he is peg feed and use intermittent oxygen at home.

with only 117 worldwide diagnosed and Drae being the ONLY ONE with the 2 variants he has together makes our boy super unique. there is limited support, there is no treatment or cure, all we can do is manage symptoms as the arise.

We are raising funds to give Drae the care, equipment, and experiences he deserves – things that aren’t always available through the NHS but make a world of difference to his comfort and happiness. Simple things like safe spaces at home, specialist equipment, or days out as a family can make his life that little bit easier and give us precious memories together.

We need vital adaptations done to our home to keep Drae safe.

To help, we are running a series of fundraising events including a Draes Spooktacular Party, Fishing Fundraiser at Linear Lakes, Silent Auction, and a music event called Draes Christmas wish which includes, stalls, games, rides, animals and much more. But we can’t do it alone – and this is where we need your support.

Every donation, big or small, goes directly towards Drae’s care and making the most of the time we have together.

Sharing this page also helps us reach more people who may want to support.

From the bottom of our hearts, thank you for helping us make Drae’s journey a little brighter and full of love.

With love,

Drae and his family

#TeamDrae #TBCKAwareness

#fundingfordrae