Niko's Journey with Spinal Muscular Atrophy type 1

Niko is a gorgeous one year old boy from Cardiff who was diagnosed with Spinal Muscular Atrophy ( SMA ) type 1 in September 2023, at just 12 weeks old.

SMA is a genetic condition that causes muscle weakness and atrophy ( when muscles get smaller ).. It can affect a child’s ability to crawl, walk, sit up and control head movements. Often, children with SMA end up with Scoliosis.

Thankfully, Niko has received a fairly new treatment (Zolgensma - gene therapy ) that aims to replace the gene he is missing and slow down any further progression ( children with SMA who aren’t treated typically don’t live past their 2nd birthday ).

Due to Niko’s muscle weakness, he struggles to clear his secretions and because of this, he unfortunately was admitted to Intensive Care earlier this year.. we spent a very long 10 weeks in Hospital. During this time, he was unable to use appropriate seating to assist with his Spine, and it has now been confirmed he has Scoliosis ( at the teeny age of One )

As SMA is quite rare, the NHS are helping in some ways, but everything comes with long waiting times and many trials and errors ( resulting in even longer waiting times ! ).. As well as that, they're limited to the amount of equipment each child is allowed, and it takes further time to apply for grants and funding from numerous charities. Time is of the essence, especially because of Niko's age and the condition of his Spine.

Niko requires intense physiotherapy ( that has been proven to work for all the SMA children we know ) .... but this all comes at a very hefty cost!

Some of the things we are trying to raise money for are : Private physiotherapy ( approx £150 per session ), extra seating / equipment ( starting at £1,400 ) private spinal brace ( starting around £2,000 ) .. bearing in mind that Niko is still a growing boy, so the equipment won't last for long!

ANY help would be so appreciated!! If you have the means to donate or share

Thank you for reading and helping our absolutely beautiful boy