Please Help Little Drae With Rare Syndrome, TBCK

Hello and welcome to our page, myself (Lisa) and friend Hayley have a challenge coming up in June, we are both heading to Scotland, York and Wales to complete the Three peaks challenge in under 24 hours. We have been training for this hefty challenge since October 2023 and we will not give up until we complete all three mountains

We invite you to join us in supporting almost 2 year old Drae, a brave soul facing the challenges of a very rare syndrome called TBCK which currently has no cure.

We would like to fundraise from a different angle this time round and make a direct positive difference to one individual who is battling and living with an incredibly rare syndrome, someone who has touched so many hearts.

I have been following little Drae's Journey since he was a tiny baby when his incredible mother started to share his journey online. Drae's journey with TBCK has touched so many hearts in the community and he has spent a huge percentage of his life in hospital. Despite the daily struggles presented by TBCK, Drae approaches life with a smile and contagious resilience that touches everyone around him.

We would like to raise funds in a way where Drae's parents can purchase medical equipment that sadly is incredibly expensive, one being a monitor to alert parents/ medic staff when he is having a seizure. Another being to help pay towards a hospital bed, this is because Drae is unable to sleep in an ordinary bed due to his condition. Both of these crucial pieces of equipment range between £1000-£5000 which of course is extremely difficult to pull together for most families. 

Any donation or well wishes will forever be grateful by myself, Hayley, Drae's family and most importantly Drae himself.

When the community get together for one little person, it can have such a significant and positive impact to their life, especially when they are battling with a syndrome that is often unheard of due to its rarity.

Thank you for your compassion, generosity and support, we will not let you down little Drae xxxx

If you would like to know more about TBCK, please read the below which was written by Rachel (Drae's Mother )

TBCK is an extremely rare syndrome which affects less than 100 people worldwide, The syndrome is known as a neurodevelopmental disorder that causes the brain and central nervous system to break down. Drae has severe low muscle tone, cortical vision impairment, dystonia, tonic clonic epilepsy, which sady is not controlled and often results in him being intubated. Plagiocephaly, Macrocephaly and global developmental delay has resulted in a gastrostomy as he can not feed orally. Drae has a port fitted as his veins are not strong enough, with this we have access for rescue bloods and medication as and when needed. Unfortunately TBCK is a progressive disease which does worsen as they grow, there is no cure and no treatment to slow down the disease.