A DESPERATE family is hoping to raise more than £1million to fund lifesaving treatment for their son who was born with a rare disease.

Baby Edward was born on September 7, at Colchester Hospital, but had to be admitted to Addenbrooke’s Hospital.

After a neurologist spotted a few worrying signs, he was diagnosed with Type 1 Spinal Muscular Atrophy seven weeks later.

The genetic neuromuscular condition causes progressive muscle wasting and weakness which ultimately leads to a the loss of movement.

Edward’s ability to crawl and walk, and move his arms, hands, head, and neck will gradually deteriorate, and his breathing and swallowing will become difficult.


Edward’s mum, Megan Willis, 29, from Colchester, says her and her partner John Hall, 36, were devastated following the diagnosis.

“We are a mum and dad who love our son more than anything in life, so our world has been turned upside down in the most extreme way,” she said.

“We had no clue about our son’s illness and he was a perfectly healthy baby in the first few weeks of his life.

“Edward has brought purpose to our life and makes each day shine in the brightest way possible.

“He is the most beautiful, happy baby and it breaks our heart that he has this condition.”

Although there is now a treatment available in the UK which can help to elongate Edward’s life, his parents are keen to explore alternative options.

Zolgensma is an advanced gene therapy medicine which specifically targets the genetic root cause of the rare disease which Edward is battling.

Once the one-time-only dose is administered, the function of the non-working survival motor neuron gene is replaced with a new, fully working copy of a human gene.


Although the treatment is not a cure and does not reverse the damage of SMA, it will increase Edward’s life-expectancy and improve his overall quality of life.

But, the innovative medicinal development, which is only available in America, comes will cost the family £1.2million.

“I can’t tell you in words how much raising this huge amount of money would mean,” added Megan.

“We have no choice, we have to raise this money.

“Edward not getting this gene therapy treatment is not an option.

“He is our whole world and I am determined to get him this money.

“So, we are reaching out to our family, friends and the general public to help us raise funds to get our son this life saving treatment.

“I also really passionately feel there needs to be more awareness of this dreadful disease.”

To donate to the Help For Edward campaign, which has so far generated more than £30,000, visit HERE.

Alternatively, contact Edward's parent by emailing: helpforedward@gmail.com