A baby given a £1.79million drug has had a new lease of life.
One-year-old Edward was born with spinal muscular atrophy (SMA) causing a lack of protein needed for muscle development.
In August, Edward was given a new gene therapy called Zolgensma costing £1.79m, through the NHS.
Zolgensma is thought to be the most expensive drug in the world, with NHS England reportedly negotiating a discount price on the £1.79m.
Now, mum Megan Willis says her son has reached milestones she never thought possible – including rolling over sitting on his own and even taking his first assisted steps.
Megan, from Colchester, Essex, said: “We are so proud of Edward.
“He’s doing incredibly well. He is far surpassing our expectations. We are so incredibly lucky. All I ever wanted was for him to be able to sit and I knew then he would have an amazing life.
“We have been working on his walking for a few weeks and he moves his own legs in the gaiters, which is a really good achievement.”
The delighted mum said her son has now gone from being lethargic to a cheeky and playful baby, adding: “This drug has given Edward his life back. He has got a new lease of life.”
Edward’s family have now moved to London so he can have physio up to five times a week.
Edward, who was diagnosed at two months old, was originally receiving treatment via a drug called Spinraza – involving regular injections in the spine for life, compared to the one-off injection of Zolgensma.
Despite it being a new drug and little is known on the long-term outcomes, Meghan said she believes this generation of babies with SMA will be the first to reach adulthood.
Edward was diagnosed at two months old, with Meghan describing this time last year as “horrendous”.
Now she says the family are looking forward to the new year, saying: There is light, there is a future.”