Ongoing Myles Terminal illness Memory Maker Fund

(This is a continuous ongoing fund used for making memories with Myles and buying sensory equipment suitable for his needs)

Hey I’m Georgia, a single parent and full time caregiver to Myles (6).

In December 2021 Myles was diagnosed with a terminal brain condition called 4H Leukodystrophy. He has 2x mutations in his POLR3B gene with one of them only ever been founded in 1 person before in the whole of medical history. The brain condition means that he has no white matter in his brain so signals to his body are severely distrupted. Heartbreakingly he also has brain damage in his brain stem and cerrebelum. This disease has also caused him to be profoundly deaf in both ears, have 3x eye conditions, left hip dysplasia enduring 2 major hip operations, history of seizures and to have very poor mobility; he can neither stand nor walk and is a full time wheelchair user.

sadly it will rob him of all movement as it progress’s including head control and there is no cure.

Fast forward to Aug’22 I took him to Amsterdam to meet the founder of this illness Dr.Wolf.

Dr Wolf explained that Myles is one of the most severely presenting patients she’s came across in her career.

I have decided to create a fundraiser with all moneys going toward making memories with Myles and giving him the best possible life whilst I can.

I would be eternally grateful for any contribution

Thank you for reading

Georgia x