5 Year Old Harry’s SMA’mazing Journey

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Anthony White ( Volunteer, Youghal Coast Guard) Donna Savage (Volunteer, Youghal Coast Guard) and Billy Farrell ( Deputy in Charge, Youghal Coast Guard) with Josh and Harry.

Youghal’s little hero, Harry Bulman, turned 5 years old recently and had only one wish for his birthday- Spinraza!!

Harry, who recently started Junior Infants in Bunscoil Mhuire Youghal, was diagnosed with Spinal Muscular Atrophy (SMA) at 18 months old, a condition which is characterised by a loss of certain nerve cells in the spinal cord called Motor Neurons. The loss of Motor Neurons leads to progressive muscle weakness and muscle wasting (Atrophy) in muscles closest to the trunk of the body such as shoulders, hips and back. These muscles are necessary for crawling, walking and sitting up. Harry is completely dependent on his Mum, Rebecca, to get him anywhere, the toilet, chair to chair, and into his bed at night. Unfortunately, there is no cure for SMA and research is on-going.

However, in December 2016 the FDA approved Spinraza (Nusinersen), an injection administered through the spinal cord, the first ever drug approved to treat children and adults with SMA. Studies show a growing body of evidence that Spinraza makes a meaningful difference to the lives of those with SMA.   Spinraza is available in numerous countries but not here in Ireland! Harry, his family, and many more SMA sufferers and their families are currently campaigning around the Country and calling on the Government to approve that the life-changing drug be made available here in Ireland.

Rebecca Bulman told The East Cork Journal “His muscles will get weaker over time and will eventually lead to where he will not even be able to chew food or breathe properly, which means that more machines will need to be used to help him. Spinraza slows down the muscle wasting and, in some cases, muscle strength can be regained.   There are children in America today who are walking and crawling and I even saw a child doing yoga on Facebook! But to be honest, as long as Harry’s life expectancy is longer than in his 20’s, that would be a win for us.   We have no idea what the future holds without Spinraza, and many young kids have passed away. Harry is a bright, loving, very intelligent little man who deserves the right to a more fulfilled life which the Government, by not approving the drug, is denying him and so many others.  SMA kids, and all sufferers, don’t have the time to wait! He is the funniest child ever and reckons, once he’s got Spinraza, he wants to fight his brother and be the strongest!

Rebecca has set up a Facebook page to help other parents and hopes to  update all Harry’s fans on ‘ Harry's SMA'mazing Journey' .

 

 

 

 

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