Hi Im Max and im setting this up alongside my Partner Caitlin’s in regards of our little boy Merlin being diagnosed with SMA Type 1 earlier this year.

Myself, my brother and both brother in laws are going to be skydiving in support of SMA funding for research and treatment on June 28th.

Every treatment costs 1.8Million per time, so we are crazy lucky that it’s covered by the NHS in England as we would have been lost without it all!

SMA isn't known let alone talked about enough world wide, so we’re on a push to help get it noticed with us also documenting Merlin’s Story on social media. (Link to the TikTok is here)

bellow is a little bit about our little boys Story so please read :) if your able to donate we appreciate it, if your not but can share this around we appreciate that just as much!

From 5 Months old we knew Merlin wasn’t developing. He couldn’t roll, he wasn’t even interested in crawling. My partner (his mother) mentioned this to Merlin’s health visitor to just be told he's just “lazy”. He then turned 6 months and still wasn’t progressing or developing. My partner, Caitlin, had noticed when Merlin sat his feet would change to a blue colour. This rang alarm bells so we rang the GP to make an appointment. From this the GP referred Merlin to the local Paediatrician. They checked him over including checking reflexes. This is where they found an issue. They decided to do genetic testing and we agreed. On the 21st January we received a phone call that changed our lives. That Merlin’s blood tests came back type 2 SMA. Within hours of this phone call the Evelina Children Hospital phoned to make an appointment the next day. On the 22nd of January it got decided he was Type 1 SMA due to being nearly 4 months old and still not hitting milestone. Since this Merlin has been on Risdiplam, completed the Risdiplam and had his Gene Therapy, Zolgensma. This treatment was a 5 day stay at the hospital, lots of tests and checks leading uo to the kain treatment day. Of course there there is still a long journey to go buy Merlin is doing so amazingly!!

The current road ahead for us is 2X weekly blood tests in London, steroids and medication we give every korning frok hime. A Cough assist machine which we use twice a day on Merlin and a Hydro Cortisone injection which is only used for worst case scenarios the same way a EpiPen is used.

for any more info frok us on Merlin’s journey or on SMA in general, reach out to us through my TikTok account :)

Much love everyone and thank you for reading! :)