Matilda Kelly’s Fundraising Journey for PERCS Surgery: A Path to Independence

05 Jun 2024

Matilda Kelly’s Journey with Cerebral Palsy: Fundraising for PERCS Surgery

Here at Tree of Hope, we provide support to families at various points of their fundraising journeys and offer long-term fundraising options wherever needed. Matilda from East Sussex has cerebral palsy, and her family has been fundraising with us since Matilda was just three years old. Now a teenager, Matilda is on a path to have an operation to help her live pain-free and as independently as possible. Read on to find out more!

Meet Matilda Kelly

Described by her Mum Lindsey as “a very bright, outgoing, extremely determined young lady,” 14-year-old Matilda Kelly loves spending time with her dog Thor (aka “Fatso”) and dancing. But her biggest love by far is riding the biggest, fastest roller coasters she can find! Lindsey told us how Matilda is a bit of a daredevil, commenting, “You definitely don’t want to be sat next to her on one of these; she will be screaming in your ear constantly!”

Fundraising for Selective Dorsal Rhizotomy (SDR) Surgery

Matilda’s family initially started fundraising with Tree of Hope back in 2012 for Matilda to go to the USA for Selective Dorsal Rhizotomy (SDR) surgery and post-operative physiotherapy. SDR is the only procedure that permanently reduces spasticity in the legs for children with cerebral palsy. The results were astonishing, with Matilda seeing a 100% improvement in the spasticity in her legs, allowing her to walk into primary school on her first day without her frame, try ballet lessons, and even improve her speech.

Urgent Need for PERCS Surgery

Matilda has had several surgeries over the years, but now that she is nearly fully grown, she is in urgent need of PERCS surgery, a minimally invasive approach for muscle and tendon lengthening. This type of surgery is not offered in the UK, so the family is fundraising £25,000 to go to Miami for surgery with Dr. Matthew Dobbs, a surgeon who has been working with Matilda since her first USA trip. The £25,000 also includes the subsequent physiotherapy that will be needed.

Mum Lindsey explained, “The alternatives offered to PERCS here are quite extreme and could result in the loss of any mobility she’s got. Our aims are to keep her as mobile as possible and, more importantly, stop the pain that she experiences on a daily basis.” Lindsey added, “Matilda has come such a long way since she was three; for her not to have any mobility after all she has been through would be devastating.”

Challenges and Fundraising Efforts

Matilda is currently experiencing extreme tightness in her legs and is in constant pain. She finds it difficult to keep up with her friends and has become a lot more reliant on her wheelchair. Lindsey commented, “This has a huge impact on her social life as when the carer is pushing her wheelchair, they can also listen in to her conversations – no teenager wants that!”

Matilda starts her GCSEs in September, so time is of the essence to get Matilda to the US by the summer. To achieve their goal, the family has a wide range of fundraising plans coming up, including a sponsored abseil down the i360 in Brighton by Dad Dave and 30 supporters, which is an overall distance of about 138 meters. Dad Dave commented, “If you think 138 meters sounds daunting, please bear in mind I'm terrified of heights!!” Also in the planning stages are a children’s mini abseil and a guided tour of Kingstanding Police Training area on the Ashdown Forest, complete with a cheese and wine feast!

Friends of the family have rallied around to support the family in other ways too, including a Bounce carnival beats evening happening this month on 16th May. The family was shocked when this sold out within two hours! Another family friend organized a ‘plankathon’ and a raffle, which raised £500. The family also recently received a contribution from the Tunbridge Wells Round Table.

Long-Term Goals and Support from Tree of Hope

To ensure the operation is as effective as possible, Matilda will require intensive physiotherapy for at least a year afterward. The family and Matilda are hoping for Matilda to live a painless life and become as independent as possible. Matilda herself sums up what it means to her, saying, “Being a teenager with cerebral palsy is never easy. I can’t do anything without being in severe pain. But every day I push through it because I refuse to let it stop me from making my life everything I want it to be. So thank you for helping me pursue my dreams. This is a major surgery and hopefully my last.”

When asking Lindsey about the support the family has received from Tree of Hope over the years, Lindsey said the support offered by Tree of Hope to the family had been invaluable. Lindsey told us, “This has been our second time around for fundraising after raising money for Matilda’s SDR several years ago, and I found it extremely difficult having to approach people again. Tree of Hope really helps you put your ideas into reality and gives you more drive. I genuinely don’t think we would have come this far without them.”

Follow Matilda’s Journey

To find out more and follow Matilda’s journey and story, follow her Facebook page here: Walking Matilda.