ON September 7, Megan Willis and John Hall experienced the euphoria of holding their newborn baby boy for the first time.

Delivered at Colchester Hospital, Edward’s arrival sparked tears of joy as he gently open his eyes.

The relatively routine birth was magical and was reassuringly followed with zero concerns for is overall health.

But seven weeks later, Megan and John, who live in Colchester but come from Clacton, were engulfed in horror as their son had to be rushed to hospital. Edward turned blue in the car and had to be resuscitated by his dad.

The tiny baby was initially diagnosed with bronchiolitis and put into a medically induced coma.

At this point, Megan, 29, and John, 36, started to dwell on certain quirks they had noticed since his birth.

Read more >>> ‘Our baby boy needs million pound US treatment’

Just a few days later, their deepest fears were confirmed when they were told Edward had been born with Type 1 Spinal Muscular Atrophy.

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

“We went into the hospital thinking our baby had bronchiolitis and we left there having been told he actually had a life-changing disorder,” said Megan.

“It felt like a nightmare and changed all our lives forever; not just mine, John’s and Edward’s, but out entire family’s lives too.”


Over time, the disease, which is a diagnosis for 600 babies in Europe each year, will stifle Edward’s ability to crawl, walk, move his head and neck and breathe.

Spinraza, an NHS-funded treatment which has only been available since 2017, will help to manage and slow down Edward’s deterioration but his life will remain limited.


Zolgensma, on the other hand, is an advanced gene therapy medicine which specifically targets the genetic root cause of the rare disease he is battling.

It could completely alter the trajectory of his entire life.

However, the one-shot treatment will not be freely available until the end of 2021 at the earliest so until then will cost an eye-watering £1.2 million.

Frustrated Megan says it is heart-breaking the quality of some children’s futures is dependent on who can - and cannot - afford it.

She added: “It is crazy there is a drug in this world which will make so much difference to his life but it is not freely available and someone’s put a price on it.

“It feels like we are in America with no health insurance and it always all about class and money and if you have money you can buy a better life.


“We are just a working-class family and it is so frustrating knowing this treatment is out there. It is working for so many children and the difference is astronomical.

“I am aware this is a rare disease but when it is your son, it does not matter this treatment could completely change his life.”

Now Megan, John and members of their close-knit family, have set themselves a mammoth task.

Through fundraisers, media coverage and social media support, the parents are embarking a quest to raise the £1.2 million needed to cement their son’s future and happiness.

So far, the devoted couple have generated more than £100,000 towards their goal and celebrities such as Harry Redknapp and Ryland Clark have shared the appeal.

Bafta award-winning actress and writer Daisy May Cooper, famous for This Country, has also been particularly instrumental in helping them raise vital funds.


It has been extremely positive start to the campaign but Megan and John have a long way to go and with every day which goes past, so does Edward’s chances.

Megan said: “This treatment is so expensive because it is so good and can be the difference between a child living a normal life or being disabled.

“But time is of the essence and it is a race against time.We cannot wait until it is available on the NHS because by then it could be too late.

“We are going to fight and get this money and even though I don’t care what package Edward comes in as long as he is here, I still want him to have the best life.”

In addition to the £1.2 million pot of gold at the end of the rainbow which Megan and John so desperately need to obtain, Help For Edward is also about awareness.

“I just want there to be more awareness in general about this disease, because I personally would have liked more support after giving birth,” she added.

“He pretty much displayed every symptom, but there were no follow up checks and no health visitors noticed there might be a problem.

“But things are now in motion and the support since has been overwhelming and amazing and it has restored our faith in humanity.”

The family set up a crowdfunding page but have now partnered with national children’s charity Tree of Hope.

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