Arthur's Story...

Arthur, after being diagnosed with Spinal Muscular Atrophy (SMA) at 5 months old, was the first baby in the UK to receive the most expensive drug in the world, Zolgensma. This gene therapy for SMA is designed to replace the missing gene that causes him to lose the use of his muscles. He has made great progress and continues to make his family and friends proud every day with his determination to get stronger.

Arthur will be two in December and is working really hard at mastering his head control. He loves watching Peppa Pig and enjoys seeing the world from an upright position in his chair, interacting with his sister Nancy and his cousins.

Our original fundraiser was beyond anything we imagined, and it meant that Reece was able to support Rosie during the many months of hospital stays that Arthur had to endure, as he was unable to work. It has helped fund accommodation and flights for Arthur's clinical trial in Italy. Arthur now has a specialist car seat that supports his head, and the fundraiser also paid for 1-on-1 physio at home, alongside electro-therapy to help stimulate his muscles.

We feel incredibly grateful that Arthur was able to receive Zolgensma on the NHS, and also take part in a clinical trial abroad. However, it is not a miracle cure. One doctor described it to us as “like going to battle with the best machine gun, but with no bullets.”

There is so much more that can be done to improve Arthur's mobility and quality of life, while enabling him to have the best opportunities possible. This is why we want to fundraise with the help of Tree of Hope. We are hopeful that we can make a huge impact on the quality of Arthur's life.

The support Arthur needs costs an incredible amount of money that we, as a family, cannot provide on our own. We would like to raise money for hydrotherapy sessions, an intensive physiotherapy course, and adaptations to the home so Arthur can use his equipment in other rooms.

Arthur isn’t classed as disabled until he is 3 years old, which means they are not eligible for an accessible car until then. This means they cannot take any of his equipment with them to visit family, on outings, or on holiday—things that are essential for Arthur to be able to interact with his cousins, do physio exercises, and engage with the environment around him. Therefore, we would like to help them change the car they currently have.

We have teamed up with Tree of Hope, a registered charity that will support our fundraising by promoting our page, allowing us to receive match funding from businesses, and enabling us to claim Gift Aid, which is amazing!

The funds raised will go directly to Arthur but will be managed by Tree of Hope to ensure they are used for the things he needs.

This is a long, long road, but we, as a family, believe slow and steady wins the race, and we are determined to win!

Tree of Hope – 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 core operating costs.

If we raise insufficient funds or surplus funds, they 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, any unused funds will be transferred to be used for the general charitable purposes of Tree of Hope.