Please Help Beautiful Baby Marley

For many the 12th October this year will be a date they’ll forget, but for this young first time Mum and Dad this date will be engrained in their memories forever, it’s the date that changed everything.


Beautiful baby Marley was diagnosed with type 1 SMA (spinal muscular atrophy) which is a genetic disorder that causes his muscles to be very weak preventing him from sitting, moving his arms and legs and causes numerous breathing difficulties. Type 1 SMA unfortunately has a very poor prognosis where 95% of babies sadly don’t make it past 18months without the correct treatment. And even with the treatment available in the UK its still not a certain it will be effective.


Marley is currently undergoing spinraza treatment (nusinersen) this is an injection every 2 weeks for 6 months with no guarantee of prolonging his life. After 6 months the family could be in the same position as now but with no UK treatment options left.


There is a treatment plan in the USA called zolgensm, this could get Marley the time he deserves by dramatically increasing his life expectancy. Zolgensma has seemed very effective in the US and has given children like Marley a good chance at a longer life.


So please help this little family to be a whole family and to spend time with each other, more time than they currently have. A child is a precious thing and all they want is to hold him for as long as they can. We hope you can help however you can.