hi my name is tony pearson im raising money for a charity which is very close to me and my wife . My 16 month old daughter grayce pearson was diagnosed with spinal muscular atrophy type 2 . Two months ago and im raising funds for the charity to continue the fight to pioneer research treatments and a continued quality of life for those with the condition and with continued physio and strength to help those stand and walk i will be doing the edinburgh kilt walk on the 15th of september 2024 . SMA is a very rare condition which is not talked about alot which needs to change And hoping the goverment will hopefully soon screen for this condition at birth and during pregnancy which they do with other conditions . which is frustrating why they dont test for it to give those who have it a better and brighter future . The work this charity do for those who have sma is amazing for the families and relatives to help them is second to none

and if sma was screened during pregnancy and the second the child is born the child can start gene therapy and once they start gene therapy they will have a better chancd of hitting there milestones as they grow up but because its not screened then the child has to go through treatment to try and build up the protein that has started to die inside there body WE MUST START SCREENING FOR SMA AT PREGNANCY AS THEY DO WITH DOWN SYNDROME PLEASE HELP ME FIGHT THE GOVERMENT TO CHANGE THERE POLICY AS THEY REFUSE TO SCREEN FOR IT

Families of infants paralysed by spinal muscular atrophy demand the Government adds the condition to ones tested for in the heel prick test, done on babies at five days

Experts have called the five-year delay by the Government’s National Screening Committee a national medical emergency. Dozens of countries, including the US, Australia, Japan, Russia, most of the EU and even war-torn Ukraine have introduced the simple test.

Baby grayce daddys doing this for you and the rest of the amazing sma clan were all in this together xxx