Note from Freddie’s Mum
On the 28th of May 2019, Freddie was diagnosed with SMA type 2 (Spinal Muscular Atrophy) at just 12 months old.
SMA is a rare genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting (atrophy).
There is currently no cure for SMA. However 13 days prior to Freddie’s diagnosis a ground-breaking new treatment was approved for use in England! (Nusinersen - SPINRAZA).
Evidence suggests that this treatment stops disease progression and allows individuals to regain previously lost muscle power if dosed early!
Freddie started this life changing treatment on the 7th October 2019. This is still not a cure for SMA. Freddie will always live with the disease, but we now have hope for the future.
Our aim is to give Freddie inclusion and independence in life. For this we will make sure Freddie gets the best treatment, physiotherapy, equipment and home modifications.
I have set up this page for you all to follow Freddie’s life with SMA and how Spinraza hopefully works for him. Alongside raising awareness of SMA and to help fundraise for all the life changing adaptations Freddie will need.
THANK YOU FOR WATCHING
please donate -click below link https://www.justgiving.com/crowdfunding/chapa-makawita-4