A COLCHESTER family needs to raise £1.7 million for life-changing treatment for their son who was born with a rare disease.

Edward Willis-Hall, who is now six months old, was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) just seven weeks after he was born at Colchester Hospital.

Seemingly entirely healthy at birth, Edward was rushed to hospital a few weeks later after turning blue in the car and needing to be resuscitated by his dad John Hall, 36.

He was initially diagnosed with bronchiolitis and put into a medically-induced coma.

A few days later, his parents were told he has the genetic neuromuscular condition SMA, and are currently awaiting laboratory confirmation.

Edward’s ability to crawl and walk, as well as his ability to move his head and neck, will deteriorate and breathing will become difficult.

Until 2017, no treatment was available for SMA and children were not expected to live beyond the age of two.

Spinraza, a treatment is now available on the NHS helps manage the condition, but SMA will remain life-limiting.

Edward’s parents Megan, 29, and John are keen to treat Edward with Zolgensma – a gene therapy which is currently believed to be the most expensive drug in the world, available in the USA.

The one-shot gene therapy works to alter the faulty gene which causes the SMA and replace it with a fully-functioning one.

The family have already raised £170,000 since November – around a tenth of what they need for the treatment.

For the best results, Edward needs to be treated before his first birthday.

Zolgensma has now been approved for use in the UK.

Megan is calling on the government to simplify the drugs approval process and to allow access to early access schemes, as happens in many other countries.

She said: "Spinraza took five years to be approved in the UK. Imagine how many children died in that time?

"It’s horrifying. The process needs to be speeded up so that these children can receive treatment they so desperately need."

She said and her husband just want what is best for their son.

Megan added: "£1.7 million sounds like a lot, but for us, there is no option but to raise it. The way I see it is it just takes 120,000 people to donate £10 each.

"It is achievable, and we are determined.

"We also want to raise awareness of SMA and other rare diseases.

"The information is out there, but it’s difficult to research."

The drug is soon to be available in England after a deal was struck earlier this month between NHS England and Novartis Gene Therapies to provide the drug to patients at a substantial discount

NHS England Chief Executive Sir Simon Stevens said: “This deal is a life-changer for youngsters with this cruel disease and for their families.

“Spinal Muscular Atrophy is the leading genetic cause of death among babies and young children, which is why NHS England has moved mountains to make this treatment available, while successfully negotiating hard behind the scenes to ensure a price that is fair to taxpayers.

“Although the health service is still under real pressure from covid, and NHS England is also focused on leading the national covid vaccination rollout, today’s agreement is an important reminder that the NHS is looking after millions of other patients too, for whom real medical advances are now possible.”

The family set up a crowdfunding page but have now partnered with national children’s charity Tree of Hope in order to give the family charity status to increase their fundraising avenues.

To donate to the Help for Edward fund, visit treeofhope.org.uk/help-for-edward.