Born in Essex County, UK, Edward was diagnosed at two months of age with spinal muscular atrophy (SMA), a condition that consists of the absence of a protein vital for muscle development.
SMAs are a group of genetic diseases that damage and degenerate motor neurons, neuronal cells located in the spinal cord, which are responsible for controlling the movements of the extremities, chest, face, throat and even the tongue.
As these neurons degenerate and die, muscles weaken, atrophy, and wear out. Over time, the condition worsens, affecting speech, movement, breathing. It is generally diagnosed in children, during their first months of life. Without proper treatment, they generally may not exceed the first two years, dying prematurely.RELATED
The newest and most optimal treatment consists of a therapy with a single lifetime dose of Zolgensma, an expensive drug, known as “the most expensive in the world,” since it costs around $ 2.1 million.
Edward was being treated with another drug, called Spinraza. He was regularly injected with it into his spine, a lifelong treatment. With Zolgensma, a single dose is sufficient. Through a social media campaign, Edward’s family was able to receive donations to cover the costs of his treatment, which has helped the Willis mitigate the consequences of the disease.
Because the drug is relatively new, its long-term effects are unknown, but Edward’s mother, Megan Willis, said it could help the first generation of children with SMA reach adulthood. According to the BBC, annually 65 children are born with SMA in England.
A new life
His parents moved to London so he could receive physical therapy up to five times a week, indicating that he is able to sit by himself and that his energy levels have improved considerably. “He has gone from being a lethargic baby to a playful one.”
“This medicine has brought Edward back to life. He has a new life. It is a marathon, not a sprint. It’s going to take a long time, but he’s doing it slowly, ”Willis said. “Now there is light, there is a future, and I honestly didn’t think Edward would have a future. I thought his time with us was numbered, but now I don’t believe it at all, “he said. @worldly