Myah's journey with SMA (type 2)

Story

It hurts to be writing this as we are still seeking the ability to come to terms with the fact that our perfect little girl now has to battle a life long fight from such a young age. On the 2nd August 2024, Myah was diagnosed with SMA Type 2 (Spinal Muscular Atrophy). SMA is a genetic neuromuscular condition that causes muscle weakness and wasting due to the loss of motor neurons. It is a degenerative disease if left untreated. Without treatment, this causes her muscles to weaken over time effecting the ability to sit up, crawl or walk along with other body functions. Myah hit all of her milestones from rolling, sitting, crawling, pulling to stand and even standing independently before she was 1. From around 14 months, we noticed Myah was becoming weak and slow in her movements and began to regress, loosing a lot of her abilities including standing. It was heartbreaking to watch. We were told on many occasions by doctors that Myah was just being lazy. Luckily as all parents would, we knew something wasn’t quite right and kept pushing for answers. After a long battle with many doctors, Myah's diagnosis was confirmed on Friday 2nd August. Myah started treatment just 6 days after her diagnosis and will continue to need treatment every 4 months for the rest of her life as without it she would continue to deteriorate. Whilst we are still not fully informed of what or how the future will be experienced for Myah we will continue to try our hardest to keep on fighting her corner, providing whatever support our little girl needs. To be able to reach her full potential, Myah will need specialist physio every week costing in excess of £110 per session, regular hydrotherapy, home adaptions and equipment along with other support all which comes at quite a cost. There are also intensive therapy courses that Myah could hugely benefit from which costs around £4,000 each time. We stay convinced that we will see our beautiful daughter take her first steps, ride a bike, jump on the bed and run around the park which was all expected and undervalued. “Never let someone’s opinion of you become your reality”. Follow Myah's journey on instagram @myah_sma