Megan Willis
Help For Edward
Fundraising for Tree of Hope
Story
Welcome to Help for Edward. This page has been set-up to raise funds for our son Edward who was born on 7th September 2020 and diagnosed with Spinal Muscular Atrophy (SMA) type 1, at 7 weeks old on 29th October. Our world has been turned upside down, in the most extreme way. 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.
Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition causing progressive muscle wasting (atrophy) and weakness leading to loss of movement. This may affect crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing. There are different forms of SMA and a wide spectrum of how severely children and adults are affected.
We live in the UK and there is a treatment available called Spinraza, which increases survival motor neuron (SMN) protein production. We are extremely grateful to have this treatment available to us, as only a few years ago, babies with SMA did not have this hope and would likely not live to reach the age of 2.
Although we have this treatment option available, there is a new pioneering much more advanced treatment called Zolgensma. Zolgensma is a gene therapy medicine for treating SMA. It targets the genetic root cause of SMA with a one-time-only dose and replaces the function of the missing or nonworking survival motor neuron 1 (SMN1) gene with a new, working copy of a human SMN gene. It is currently only available in the USA and with a large price tag, £1.2m!
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. This can be done by donating, sharing our story to everyone and anyone you know, setting up fundraising ideas or events - whatever you can do will be truly appreciated. We can’t do this without you and will be eternally grateful for any donations or support, large or small.
Zolgensma will give Edward the best chance to live a fulfilling life. From a Mum and Dad who love their son more than anything in life, we thank you from the bottom of our hearts.
Megan and John xxx
7.5% of all donations will go to Tree of Hope in relation to this appeal will be allocated to the general charitable purpose of Tree of Hope, to the core operating costs.
If we raise insufficient funds or surplus funds, the funds will be used, if appropriate, to fund for our child's needs in accordance with Tree of Hopes charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hopes charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purpose of Tree of Hope.