Help for Edward
Diagnosed with SMA Type 1 at just 7-weeks-old, Edward's parents turned to Tree of Hope to raise funds for their son's treatment and ongoing physiotherapy.
At just 7 weeks old on 29th October 2020, Edward was born with Type 1 SMA, causing progressive muscle wasting and weakness, leading to loss of movement, affecting his ability to walk, crawl and restricting arm, hand, head, and neck movement, as well as breathing and swallowing.
Megan and John, Edward's parents began their #HelpForEdward campaign after his diagnosis, with the aim of raising £1.2million for a life-changing gene therapy treatment called Zolgensma, 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. Babies with SMA have a faulty or missing SMN1 gene so can’t make enough SMN, which Zolgensma replaces.
However, in March 2021, Zolgensma was finally approved as a treatment offered by the NHS, meaning that, after a long medical battle, Edward was offered this life-changing treatment.
Zolgensma, however, is not a cure and Edward will continue to need intensive physiotherapy, hydrotherapy, and equipment to ensure that he is given the best chance of independence and mobility.
“Use your resources. Tree of Hope provide campaign management and good PR opportunities, that we have benefited from. With the gift aid you get for your donations as well, it’s the way to go.”
