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 lives and makes each day shine in the brightest way possible. He is the most beautiful, happy baby, and it breaks our hearts that he has this condition.

Spinal Muscular Atrophy (SMA) is a rare, genetic neuromuscular condition that causes progressive muscle wasting (atrophy) and weakness, leading to loss of movement. This can affect crawling and walking ability, arm, hand, head, and neck movement, as well as breathing and swallowing. There are different forms of SMA, with a wide spectrum of severity in how children and adults are affected.

We live in the UK, where a treatment called Spinraza is available. Spinraza increases the production of survival motor neuron (SMN) protein. We are extremely grateful to have this treatment available, as only a few years ago, babies with SMA had no such hope and would likely not survive to see the age of two.

Although Spinraza is an option, there is a new, pioneering, and 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 missing or nonworking survival motor neuron 1 (SMN1) gene with a new, functioning copy of the human SMN gene. Unfortunately, it is only available in the USA and comes with a large price tag: £1.2 million!

We are reaching out to our family, friends, and the general public to help us raise funds to provide our son with this life-saving treatment. You can help by donating, sharing our story with everyone you know, setting up fundraising ideas or events—whatever you can do will be truly appreciated. We can’t do this without you, and we will be eternally grateful for any support, whether large or small.

Zolgensma will give Edward the best chance to live a fulfilling life. As parents who love their son more than anything, we thank you from the bottom of our hearts.

Megan and John xxx

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s 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 Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.