On March 30th, I’ll be heading to Scotland to spend 10 days walking almost 200 miles from Glasgow to Inverness. The aim of this walk is to raise money so that we can build a sensory garden for Leela to enjoy.
Leela is 2 years old and was born with a condition called SMA-LED which stands for spinal muscular atrophy with lower extremity predominance. Leela’s case is not your typical SMA, as she is one of the only 30 known cases in the world!
SMA-LED is an extremely rare neuromuscular disorder of infants, which is characterised by severe progressive muscle atrophy, particuarly prominent in legs. This means that Leela is unable to stand, crawl, sit unaided, weight bare or walk and she has very minimal movement from the waist down. She will be reliant on a wheelchair for her whole life and as with many genetic disorders, there is no known cure for SMA-LED.
Leela also suffers with reflux, has issues with feeding and swallowing, suffers from epileptic seizures, has arthogryposis, bilateral clubfeet, global development delay, hypotonia and ASD with pulmunary branch stenosis.
All in all, Leela is an incredible little girl who despite having all of these conditions, is one of the happiest, most content children you will ever meet. We would love to build a sensory garden for Leela, which will serve as a relaxing environment for her to spend time in and help build up her sensory skills.