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Vinnie

Our SMA Story

Vinnie was born by C section on the 24/03/2015 and he was absolutely perfect in every way but I could never shake that feeling that he was too perfect. Always in the back of my head I had this horrible that something was terribly wrong. By the time he was 4 weeks old I was secretly researching things and doing “tests” on him as by then I was convinced something was up. My health visitor, GP and most people to be honest played it down and even suggested that I had post-natal depression, but that’s just not my style.

When Vinnie got a tummy bug at 8 weeks old, I used that as an excuse to take him into hospital and I basically refused to leave until he was seen by a senior member of the team there. I could tell by the way they were moving his limbs they suspected something was wrong as they were the same movements I had been conducting the weeks previous to that. Bloods confirmed high CK levels. That’s when I knew. I had read enough literature over the weeks to know what those results meant and I knew that my gorgeous little boy was in for a fight just to live.

We received the official diagnosis at 9 weeks old, the neuromuscular consultant just looked at me and went “You know what I’m going to say don’t you?” Yeah I did, all I could do was ask how long we had whilst trying to hold it together. I can’t really remember much about the weeks or even the months that passed after diagnosis. I sat up all night long searching for anything that would give us hope. I spoke to every family across the world.

We were one of the lucky ones, Vinnie was born just as they were looking for children under 7 months to participate in the trials for Spinraza at Great Ormond Street. We grabbed it and made it into the trial just two days shy of him being 7 months old as he had been in hospital for 6 weeks fighting his first and only chest infection.

I could go on forever about the failings of his care thanks to a London hospital. We nearly lost the most precious little boy because they could not give him what he needed. After a lot of arguing we finally got him out of there and into the care of the Brompton Hospital in Chelsea and we have never looked back. Vinnie has gone from strength to strength this year, Spinraza has given him more movement but also improved his respiratory health so much that he is now off his ventilator 7 hours a day which he hadn’t done since he was 8 months old. With education, a good team and treatment for the first time ever there is hope.

As Vinnie lay on a table being bagged, blue and starring at the ceiling I made a promise to him that if he was brave and got through this that I would ensure he would have the best care and I would fight tooth and nail for SMA. We will never underestimate the strength of our beautiful boy again and I will always fight.

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