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Here at Tree of Hope, we’re constantly learning and working with families to help them give their children the care and specialist treatment they need. In November, we started working with #HelpforEdward a national campaign lead by Megan Willis, Mum to Edward, who is campaigning to not only raise £1.2 million for her son’s treatment, but to also change the face of SMA for families like hers.
At just 7 weeks old on 29th October 2020, Edward was born with Type 1 SMA, turning Megan & John and their families lives upside down.
Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition in which the lack of a protein called SMN causes progressive muscle wasting and weakness, leading to loss of movement, affecting a baby’s ability to walk crawl and restricting arm, hand, head and neck movement, as well as breathing and swallowing.
Devoted parents Megan and John were immersed into a world they knew nothing about and were hit only with limited and (later learnt) outdated and incredibly bleak statistics that 95% of children with Type 1 SMA don’t live beyond the age of 2.
“The first days were just a living hell” Megan stated. “We didn’t have enough information that we needed to be able to cope and process the disorder Edward had.” Megan explained “It was like all the air went out of the room. We made the mistake of being consumed by the very limited facts that were available and we were faced with this awful grief that our son was dying as we could only think, how can Edward beat this?”
The family concluded that the amount of research was very limited and so they took it upon themselves to do the research at a greater depth. “Everything changed for us and it was the hope we needed.” Putting the Go firmly in Megan’s Get up, the campaign began, and #HopeforEdward was born, aspiring to raise £1.2 million for life changing treatment Zolgensma.
“We found out about Zolgensma and it was the first real hope we had that would give Edward the best possible option, it’s not something we could sit around and wait for.” Thought to be the most expensive drug in the world, Zolgensma is a one-time jab that can completely halt Edward’s rapid deterioration, allowing him to lead a healthy life that all parents wish for their children. Babies with SMA have a faulty or missing SMN1 gene so can’t make enough SMN, which Zolgensma replaces. The corrected gene is put into a virus (that’s had its DNA removed) and is then injected into the baby’s hand. Whilst the family recognise it is a huge sum of money to raise, the chance it gives Edward to thrive from just a one-time treatment is priceless.
To ensure he doesn’t deteriorate in the meantime, Edward has started the widely known treatment Spinraza on the NHS. Edward’s type of SMA means he can access this freely but it’s a bridging solution and the effects aren’t long term and it would be likely he would need to have this regularly, alongside physiotherapy for the length of his life, to keep up the effects. It’s also highly invasive.
“The improvements in Edward already are just amazing, he can move his little arms and legs and he has slightly more control over his head movements. We couldn’t be happier with his progress so far, but speaking to other SMA parents I’ve met, this most definitely isn’t long term and it does wear off within a few months which is why we’re going for the Zolgensma. Megan went onto say, “The hope is that Spinraza and Zolegensma treatments will overlap as it takes time for the Zolegensma to take effect, but it’s something I need to speak to the specialists about.” The money raised will also be used to help Edward’s development including physiotherapy, hydrotherapy and equipment. Megan explained, “Edward needs to be pushed in every way possible to ensure he’s given the best chance. We’re starting physiotherapy soon at Kids Physio Works to make sure we’re keeping on top of Edward’s development. He will always have SMA, we just need to manage it in the meantime of him getting Zolgensma, as with SMA time is of the essence.”
The family set up a crowdfunding campaign, which raised over £30,000 in a matter of days. The family then partnered with Tree of Hope to benefit from the gift aid and having a registered charity attached to help further legitimise their cause and increase PR opportunities. Since then, the campaign has raised over an incredible £120,000. On asking about their initial quick success of their campaign, Megan explained, “I would say about 95% of support has come from social media. The Daily Mail article, on top of the awareness, has raised about £40,000 so that really has been amazing. It’s reached the US as well through various connections which was completely unexpected.”
Megan has a marketing and social media background in her role as Events Manager and as soon as Zolgensma became the hope for Edward, Megan called upon her family’s support and they immediately set up a marketing campaign.
“Most of the money has been raised through Instagram and raising awareness and lots of people sharing our stories. My family is quite big and everyone at the very beginning put absolutely everything into spreading the word. My brother runs a business and he just dropped everything for Edward, it’s been a massive team effort.” Megan went onto say “Our family and friend connections got celebrities following and sharing our posts and regular updates about Edward. You just need the right people to share with the right following. Actress Daisy Mae Cooper helped the family raise the initial £40,000.
The family’s campaign exploded. Megan told us “The first couple of months of having Edward were just crazy for the whole family and it definitely burnt us out and over Christmas we needed a break and wanted to just enjoy Edward. Edward needed his Mum and not me sitting on my phone plugging away constantly.”
Megan has become a huge advocate in championing SMA to help spread the awareness of the disease to help ensure less families are faced with the heartache them and hundreds more get hit with every year. Megan is working with SMA charities to help campaign for an SMA Screening Programme to be implemented, which got rejected in 2018, due to there being no treatment available until 2017, meaning a lack of research to quantify improvements; but Megan sees a real opportunity for the possibility of it eradicating SMA in the future.
She told us, “The programme is very new and still in it’s trial stages, but with Edward it’s something I completely believe should be normal and available to everyone. Oxford University are currently doing trial screenings and their research has shown that 100% of children who have Spinraza or Zolgensma treatment before symptoms show go onto live a symptom free life. Now there are effective drugs, there is hope. There are 60 children born with Type 1 SMA in the UK every year, so this is an expensive programme to implement, but it will save the NHS in the long term. It could be that the programme even detects SMA in pregnancy as Edward showed very little movement towards the end of my pregnancy, which was obviously due to the SMA.” Megan went onto say, “We’re very lucky that it got detected in Edward when it did, but so many more families find out later on which we need to change if there’s a way.”
We asked what advice Megan and John would give to other parents who find out their child has SMA. “Don’t panic!” Megan and John both said in unison! Megan went onto say “and do your research. It really did give us massive hope and that has carried us. If Edward gets Zolgensma, the research tells us that he will live to be an adult and have a good healthy life. Look past the negativity and the stats that are no longer relevant and don’t compare your child to any other.”
Megan also said “I would also say enjoy your child as well. I was so focused on Edward having SMA, we thought he was dying, but that wasn’t the case at all, and you won’t get that time back. I wasn’t in that new-born bubble, just keep the faith and have the hope that everything will be OK. The expectation when you have a baby is that it will never be you that has a seriously ill child and we have taken the time to mourn the healthy son we wanted to have, but don’t let it consume you. Yes, your life will be more difficult, and your commitments will be bigger than a ‘normal’ family, but your baby is your baby, so treasure that. Find the strength to be that parent you want to be because you have to get on with it.”
Megan and her family’s background and combined experience meant that they took to crowdfunding quite naturally and a good plan and use of family’s support was key. Megan told us “Since Christmas, we’re all ready to hit the ground running again. We have our first Zoom meeting tonight to get a plan together. We always have meetings; we have minutes and everything!”
Megan went onto say, “I basically delegate and everyone else involved has their jobs and they do it. My sister manages Facebook, my friend manages Twitter, I have another friend who does all of our corporate support, which means I can focus on Edward. We asked Megan what advice she would give to Tree of Hope families fundraising, to which Megan said, “Use your resources. Tree of Hope provide campaign management and good PR opportunities, that we have benefitted from. With the gift aid you get for your donations as well, it’s the way to go.
To donate to Edward’s campaign, head to: http://www.justgiving.com/Edward-Willis-Hall
For more information about our Family Support and Fundraising services, please call our Family Support team for more information on 01892 535525 or email firstname.lastname@example.org