Ernest Omoarelojie with Agency Reports
Edward is just eleven months and certainly has no inkling of what record setting represents. Unaware as he is, nature has however, compelled the Colchester, Essex born, UK, kid to stand out uniquely in setting a record that may take long to overturn, at least, given his age.
Wonderful, you’d say.
Unfortunately, his record breaking feat is courtesy a rare fatal ailment, Spinal Muscular Astrophy, SMA, a disease that causes the muscles to grow weak and progressively waste away.
For reprieve, Zolgensma is on hand to turn Edward’s condition around. The only snag, a huge one at that, is that it is for a price that keeps heading spinning as it breaks every medical price tag. Edward’s treatment, a single injection, came at a princely £1.79m price tag.
Already, Edward has received Zolgensma, the new, very invaluably pricey, gene therapy drug, produced by AveXis Inc, a Bannockburn Ill-based company owned by pharmaceutical giant, Novartis, at the Sheffield Children’s Hospital. However, UK’s NHS had to step in and negotiate an undisclosed discount on its £1.79m price tag before it was administered on lucky Edward.
Edward’s obviously elated mother, Ms Megan Willis, described the emotions from knowing that her son will be safe after all, as incredible, adding that she is “so excited and relieved”. She added that she is really full of gratitude that her son had been granted the drug, which contains a replica of the missing gene SMN1.
Prior to the treatment, the family described their feeling as that of abandonment as they “race against time” for their son to receive the drug, which must be given as early as possible.
“It’s so stressful knowing there was a wonder drug out there,” said Ms Willis aware they could not get hold of it even as they had tried to raise the money privately and had started to organise a protest before it was granted.
For so long we have been trying to fight for this drug. I think I am in shock, I can’t believe the day is here,” she added.
About 65 babies are reportedly born with SMA in England each year. The disease causes muscle weakness, affects movement and breathing, in which case most babies born with it do not live past the age of two without medical intervention.
Edward, diagnosed at two months old, previously received injections of another drug, Spinraza every four months. But the drug only helps in slowing the muscle degeneration process and usually involves regular, life long injections in the spine compared to the one-off Zolgensma injection.
Ms Willis, who described the outcome as if her family had been “reborn” following the treatment, said, .
“Edward has got a very bright future ahead of him. He is the perfect baby and he’s a very happy little boy. I feel like the first year of his life has been robbed from us, but he is one next month and we can move on as a family, now that we know he is having the very best treatment.”