Help for Edward

Hello all,

Im Meg. I am starting this campaign again as need to continue to raise funds for Edwards care. We last campaigned in 2020 and raised a staggering £130,000. However, we didn’t appreciate at the time how expensive it is to have a child with complex needs. Edward is thriving with the care we are so fortunate enough to give him. But this is a never ending battle.

This is our story:

Our beautiful boy, Edward, has also been diagnosed with type 1 SMA (Spinal Muscular Atrophy), the most severe form of this rare genetic neuromuscular condition. Edward’s diagnosis shattered our world and changed the course of our lives forever.

At just 7 weeks old, Edward suddenly stopped breathing. In that terrifying moment, everything we thought we knew about our future was ripped away. We were thrown into a world of emergency hospital stays, urgent medical decisions, and a race against time to get him the treatment he so desperately needed.

Type 1 SMA is a degenerative condition that causes progressive muscle weakness, robbing children of their ability to move, swallow, and even breathe. Without treatment, it is sadly fatal. But we weren’t willing to give up hope. We campaigned tirelessly to get Edward access to life-saving treatment, and through a combination of determination, advocacy, and the support of our community, we did.

Today, Edward is here with us—and he’s our little miracle. But the reality is, the fight doesn’t stop with treatment. SMA doesn’t just go away. The damage it’s already caused requires constant, intensive support, and the cost of giving Edward the best possible quality of life is staggering.

We currently spend over £30,000 a year on therapies and equipment not covered by the NHS. This includes daily physiotherapy, intensive therapy blocks, private bracing for his scoliosis, and custom orthotics to support his growing body. Every bit of this care is essential to keep Edward comfortable, mobile, and thriving.

Having a child with complex needs is emotionally and physically demanding—but it’s also financially draining. Your support means the world to us. Every donation helps us continue to fight for Edward’s future and give him the best possible chance at life.

Thank you for being part of our journey. We couldn’t do this without you.

All money raised will go towards Edward’s private care Including medial equipment, private physio and private orthotics.