I've raised £1000 to help Chloe overcome Acute Flaccid Myelitis (AFM)
Organised by Tomas Stoneham
Story
Me and my partner, Amy are running the Canterbury 10 mile road race on 27th January 2019 to raise money for Amy's three-year-old cousin Chloe. I have not run in over two years and get out of breath just walking up the stairs at home!! I have just 23 days to train! Why are we doing this you ask? Read Chloe's story below:
Chloe (aged 3) attended her first ballet lesson on Saturday 15 September, but only a couple of days later she suddenly lost complete movement of her left arm and hand. Chloe's left arm is now paralysed along with her hand.
She has Acute Flaccid Myelitis, a extremely rare, but serious condition with no known cause. However it is thought Chloe contracted a virus which caused inflammation on her spinal cord and has resulted in damage to the nerves that control her left arm and hand. (C5 and C6 of spinal cord). She also has weakness in one leg and her core, however with rehabilitation these are improving.
We are raising money to help rehabilitate with the hope that she regains strength and movement in her arm again and if not enable her to continue to use her arm with the support of a mobile arm aid. This specialised equipment will help her regain her muscle mass which has wasted and caused her shoulder to sublux.
She requires specialist equipment including a full stimulation body suit to help electrically stimulate the muscles in her arm as well as her core (which has also been affected).
Mobile Arm Aid (pictured) - £4,000 (estimate)
Full Electronic Stimulation Suit (Mollii) - £4100 plus VAT
Chloe attends hydrotherapy sessions in Bristol Children's Hospital which hugely benefits her recovery as this is where she has shown most movement in parts of her arm (slight elbow to wrist movement). However once we are discharged from Bristol, the community can only offer one session a week. We therefore would like to also pay for private sessions. Money not used for specialist equipment will fund extra physiotherapy and occupational health sessions.
As we research there might be more specialist equipment we need. Also we may look into any hand treatments if movement hasn't returned within 18 months.
