hello & welcome!

on the 23rd of october 2018,Rayne was diagnosed with spinal muscular atrophy type 2,also known as SMA! rayne was just 2 years old,which not too our surprise was considered a late diagnosis of the condition!

heres a little bit about SMA:

it is a rare neuromuscular condition,which is genetically inheritated! it causes progressive muscle weakness & loss of movement in muscles such as the legs,arms,wrists,feet etc!

however,a ground breaking treatment finally got approved in the UK called spinraza (nusinersen) this medication is admistered via lumbar puncture into rayne's back! evidence so far suggests that the medication is slowing down the progression of the condition with the possibility of progression such as crawling!

rayne has had 4 loading doses & his treatment will be admistered every 4 months from here on out! this is not a cure for SMA,the disease will always be present with rayne & he will have it for the rest of his life!

the wheelchair will help rayne be able to play with other children,go for 'walks',move around home,go to the bathroom on his own,learn to wash his hands etc! the list goes on!

rayne has began to question me & his father (dylan) why he cant walk,he gets awfully upset & has began to say

thank you for taking the time to read raynes story,you reading his story is more than appreciated!!

if you can donate,thank you so much! it means the world to us!❤️