Hi I'm mum to a wonderful 10 year old boy, Harrison..Harrison has a ultra rare genetic condition called KIF1A (affecting only 0.0001% of the population) this is a neurodegenerative condition affecting Harrison's whole body causing a shrinkage of his brain, spinal cysts, visual impairments, hypotonia, abnormal muscle movements and more. Harrison has been recieving NHS physio since he was 10 months old but this hasn't been as effective as we would have liked as we know how stretched the NHS is. He needs a more 1-1 personal physio who can provide a structured plan based on his individual needs. Harrison is starting to get scoliosis of his spine due to incorrect posture, dystonia and muscle spasticity, he needs referrals to spinal doctors as well as an intense physio program to make sure this doesn't significantly affect him in is future. This is something unfortunately, the NHS simply can't provide. The physio will be supplied by an amazing physiotherapist who specialises in neuro conditions and we had his initial assessment today and it was amazing (literally had me in tears) but this comes at a cost. Each 1 hour session is £60 at 1 session per week so if any of our friends and family can help we would be forever grateful.

Harrison deserves to have a chance to succeed in everything he does! He's a wonderful, bossy, charismatic, charming and mischievous young man who is very determined to be independent and as his parents we want to give him the very best life has to offer. Thank you in advance.

The Clark family