Help Lucy get ExoSym prosthetic devices
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Hi everyone, thank you for visiting my GoFundMe.
I’m Lucy and I’m 14. I love sports and especially dancing. I live in Dorset, England .
I was born with a rare type of tarsal coalition (talonavicular) in both of my feet. This means two of the large bones in each of my feet are fused and have no joint. In my case, it is not possible to surgically separate the bones. I have had pain on and off since I was 7. I've never gone more than 6 months without physiotherapy or needing crutches and I have had long periods of needing to use a wheelchair due to severe pain. When my feet have been good for periods of time, I’ve been active, and I really love to dance, but my feet have always hurt when I walk on uneven surfaces.
Since August 2023 , the pain in my feet has been steadily increasing and I now have osteoarthritis in my feet. The high levels of pain mean that I have used crutches for a long time, and a wheelchair since February 2024. I’ve seen so so many physios and podiatrists, as well as chiropractors, orthotists, orthopaedic surgeons and occupational therapists. I’ve tried orthotic insoles, air boots, taping, acupuncture, hydrotherapy, and a cortisone injection. Nothing has helped enough to enable me to be fully mobile without pain.
I've been told by the orthopaedic surgeon that high impact sports will make the joints and pain worse.
Recently I've also been diagnosed with a connective tissue disorder called Hypermobile Elhers-Danlos Syndrome (hEDS). This is a lifelong condition which, amongst other things, causes pain in several of my joints, along with fatigue. It’s important to manage the EDS through regular exercises from a physical therapist, and joint protection strategies, which the NHS is unable to offer long term.
The pain stops me from doing lots of activities, such as walking around school. It’s often painful to climb stairs, and even to swim. I’ve had to stop going to my clubs as they’re not accessible to me. As I’m not used to using a wheelchair, I’ve also struggled with shoulder pain for most of the year, and now can’t self propel and need to have others wheel me.
I am raising money so that I can travel to the Hanger Clinic in Gig Harbour, near Seattle in the USA, to get custom made ExoSym Devices (see photo). These will be made to my exact measurements and will enable me to walk, run, jump, climb, cycle, play sport standing up, walk on uneven surfaces such as fields or the beach- with little or no pain.
They will be made by the prosthetist/orthotist who created the device 14 years ago, and I will spend 10 days at the clinic with the team, training with them, learning how to use them and how to get the most out of the devices. He has made over 3,000 devices for patients.
People travel from all over the world to get ExoSyms to help with tarsal coalitions, arthritis and other foot conditions. I am hoping to travel to the USA in 2025.
The devices will cost $19,000, and I am also raising money for flights and accommodation whilst I am there, new shoes (as they will need to be bigger with the device in my shoe too), as well as ongoing physio support when I get back to the UK. This is crucial to getting the most benefit from the ExoSyms, as well as managing the hEDS.
The hope is that the ExoSyms will reduce or even completely remove the pain I feel when standing, walking and exercising, and they will prevent further damage to my feet. They will give me back my independence. My Orthopaedic Surgeon supports me getting ExoSyms, as they are non-invasive and are no risk to my feet. I am very excited about returning to so many of the activities that I love that I have not been able to do over the past year. I’ll need to work hard to ensure that the ExoSyms work for me, and I am so ready to get started.
Thank you so much for considering to help me get my ExoSyms. Any donations or shares mean the world to me because this prosthetic is life changing.
No worries if you aren't able to donate but I’d really appreciate it if you could share this GoFundMe.
Thankyou so much for reading.
Lucy
Link to the Hanger clinic: https://hangerclinic.com/clinics/WA/gig-harbor/erickson-st/
Organizer
Laura Ahsan
Organizer