donations for Baby Drae

Hi, my names Destiny and i’m fundraising for my very poorly 7 month old baby brother who’s not long ago go diagnosed with TBCK.

I’ve started this page to help pay for the equipment that baby Drae needs due to his disability, as it’s all very expensive and alot to pay for, for my mum.

It would mean a lot to me and my family if you donate we will appreciate every penny ❤️

Rachel (Mum) - Drae was diagnosed at the age of 17 weeks with a life limiting syndrome called TBCK. It is extremely rare with less then 100 in the whole world, amd only a handful in the uk. Basically Draes body doesn’t produced the protein he needs for his brain to function, which in affect causes the break down of brain and central nervous system. Causing severe hypotonia and global developmental delay. Drae also has dystonia and has myoclonic seizures. He lost the ability to swallow so is solely tube fed. We now know drae has 2 varients, both which have seen before in other patients, and both which are at the severe end of spectrum, what has never been seen before is both of these varients being in one person, Drae is the only person ever to have this worldwide so far, he really is one special little warrior. We are getting help from lots and lots of different professionals, for example his new pushchair/wheelchair, it’s fantastic for him, and supports him where he needs it. Unfortunately a car seat is something we have to provide ourselves, at present drae is in a “normal” baby car seat but it is not suitable for him, amd actually because we need to place cushions under him to try and get him in a “safe position” it’s actually u safe and illegal too. We need to do this because drae quite often struggles to swallow his own saliva, which causes him to choke (many times we have had to do an emergency stop so we can help him) also if we don’t put a cushion u see him his head falls too far forward which causes him trouble breathing, where he has no head or trunk control. Drae along with me and Darren, the kids and our families, have one hell of a journey to come and if we can do whatever it takes for drae to be comfortable, happy, safe and as well as we can make him be, that’s what we are goin to try and do our best to do xx

I have attached a copy of quote for the car seat tgat drae desperately needs