At 19, my Nephew Tom was diagnosed with an extremely rare degenerative neurological condition reported in fewer than 70 people worldwide! It’s cause is a faulty gene called “Tim” (TIMM8A to be medically correct)
Tom was born healthy, but went profoundly deaf as a toddler and began experiencing movement and co-ordination difficulties in his teens.
His condition has worsened considerably in the last year and now requires constant supervision and care. Tom can no longer wash, dress, or feed himself or go to the toilet without assistance. He has limited mobility and uses a wheelchair when out and about. Tom is unable to eat and drink orally, instead he is fed via a tube directly into his stomach.
The prognosis for Tom is not brilliant. The severity and the rate of progression of the condition varies in patients. Nonetheless, Tom will experience worsening of his symptoms in the coming years, including atrophy of his optic nerves (Blindness) and dementia.
This debilitating condition has a life changing impact on the whole family. Their home has been altered to accommodate a ground floor bedroom and bathroom for Tom & his carer.
To help Tom maintain as much independence for as long as he can, additional adaptations can be made. Any money raised by your kind donation will assist with these adaptations.
Thank you for reading and wish me luck.