Arthur Morgan

Arthur's Story.... 

Arthur, after being diagnosed with Spinal Muscular Atrophy (SMA) at 5 months old, was the first baby in the UK to have the most expensive drug in the world, Zolgensma. A gene therapy for SMA designed to replace the missing gene that causes him to loose 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 is loving seeing the world in 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 has had to endure as he was unable to work. It has helped fund accomodation and flights for Arthur's clinical trial in Italy. Arthur now has a specialist car seat that means his head is supported and it also paid for 1-1 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 whilst 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 to the quality of Arthurs life.

The support Arthur needs costs an incredible amount of money that we as a family cannot find alone. We would like to raise money for hydrotherapy sessions, an intensive physiotherapy course and adaptations to the home for Arthur to be able to 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 which are essential for Arthur to be able to interact with his cousins, do physio exercises and engage with the environment around him. So we would like to be able 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, allow us to receive match funding from businesses and enable us to claim gift aid which is amazing!

The funds raised go directly to Arthur but are managed by Tree of Hope to ensure its used on 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 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.

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