Neil O’Brien, MP for Harborough, Oadby and Wigston has lobbied Health Secretary Matt Hancock MP, on behalf of constituents from Oadby.
Mark and Panna Wilson live in Oadby with their three-year-old son Aadi, who suffers from a rare condition called Spinal Muscular Atrophy (SMA), and are calling for treatment to be made available on the NHS.
Aadi Wilson has SMA Type 2 – a genetic condition that causes muscle weakness and can leave children with respiratory difficulties. There is a treatment, called Spinraza, that could help him – but it is not currently available on the NHS in England.
Aadi’s parents, Mark and Panna, are joining charities Muscular Dystrophy UK and Spinal Muscular Atrophy UK in calling on NICE to approve Spinraza when it meets on Wednesday 6 March. In August last year, in draft guidance, NICE said it was minded not to recommend the treatment for use on the NHS, but it has yet to make a final decision.
Neil said, “I’m grateful to Mark and Panna for coming to my surgery to discuss this hugely important issue, along with their son Aadi. This is an extremely rare condition, and as such it’s important that NICE allow maximum flexibility in their decision making process, so Spinraza can be fully considered.”
Mark said: “Aadi is a bright, funny, clever toddler, but his mobility has deteriorated, and that’s difficult to manage as parent. We see our friends’ children getting older and stronger, but our son doesn’t. It makes us value what we have now. We are a normal family looking for the best for our child. There is a treatment that could change our life, and that’s what we’re asking people to remember.
“It is an exciting time, because there is a treatment out there and others that are coming through. It feels like, in 10 or 15 years, there will be treatments for people with conditions like SMA. We know there is no certainty and that Spinraza doesn’t have the same effect on everyone, but it gives us hope.”