Details of five-year-old Edward's remarkable recovery were published by the BBC on 31/12/2025. He is among the initial patients to benefit from a spinal muscular atrophy (SMA) treatment program, funded by England's National Health Service (NHS).

Four years ago, Edward was diagnosed with SMA type 1 when he was just two months old. This is the most severe form of a rare genetic disease, causing rapid muscle degeneration, paralysis, respiratory failure, and often leading to death before two years of age if left untreated.

Edward Willis-Hall was diagnosed with spinal muscular atrophy (SMA) when he was two months old. Photo: Chosun

The turning point came in 3/2021, when the NHS reached a historic agreement with the manufacturer to include Zolgensma – the world's most expensive drug, listed at 1.79 million GBP (approximately 2.4 million USD) – in its treatment formulary. Edward received a single dose to introduce a healthy gene into his body, replacing the faulty gene.

The treatment results brought "miraculous progress". Megan Willis, Edward's mother, said her son had achieved motor milestones the family had never dared to dream of. Despite undergoing surgery to replace both hip joints in 10/2024, the boy has now made a good physical recovery.

"Edward can now do everything a normal five-year-old child can. He has just started school, made many new friends, and even learned to swim and float on his own – a very difficult skill for children with muscular atrophy", Ms. Willis shared.

To provide her son with the best possible recovery conditions, the Willis family moved from Colchester to London, allowing Edward to conveniently attend physical therapy five times each week. His mother also quit her event management job to dedicate herself to caring for her son.

Professor James Palmer, medical director of NHS England, confirmed that Edward is one of over 150 children with SMA saved by this therapy. According to NHS statistics, approximately 60-80 infants are born with this condition each year in England. Previous clinical studies showed that children treated early with Zolgensma have a superior survival rate and most develop motor skills such as sitting and walking without assistance.

Although the NHS subsidized the medication, the intensive rehabilitation process remained costly. The Willis family has appealed to the community, raising 170,000 GBP through a GoFundMe page over the past five years to cover private medical services not covered by insurance.

Binh Minh (according to People, BBC)