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Hello everyone,
As many of you know, I have had extensive surgeries on my left leg, foot, and ankle to correct deformities related to my genetic condition. My last foot/ankle reconstruction in 2018 was successful and decreased the pain to a point where I could run, play recreational softball, and be more functional than I had in years prior. However, over the last year, the chronic pain, swelling, and poor joint mobility have worsened drastically. Unfortunately, a lifetime of walking on a deformed foot/ankle has resulted in severe arthritis that causes me significant, daily pain.
It is now impacting my ability to navigate my activities of daily living and work, let alone allow me to jog or be more active. Within a month of starting my new clinical job in February, where I am on my feet for the majority of my 10-hour shifts, the pain became so excruciating that I have had to sit in the hospital cafeteria for 2 hours after my shift before the pain is tolerable enough to touch my foot to the ground and commute home. These pain flares often prevent me from sleeping well and impact my walking the next day.
After updated x-rays and an MRI in April 2024, we realized the extent of the damage throughout my foot and ankle. My orthopedic surgeon recommended a custom ankle brace, called an AFO, to help support my walking. The AFO has not helped as much as we hoped. In early July 2024, my pediatric orthopedic surgeon referred me to an adult foot/ankle surgeon to discuss surgical options because the brace still leaves me with high pain levels every day and an adult provider has more expertise in treating arthritis. Some surgical approaches could be ankle fusion or ankle replacement, but surgery is the last path I want to take right now. In addition to the 3 foot/ankle reconstructions, I have had 26 other orthopedic and neuro surgeries... I am beyond exhausted from the constant surgeries and recoveries.
After extensive research and consultations, I have found that there is another type of custom brace that feels like my best hope for walking with significantly less pain and improving my quality of life. It is an offloading brace that also provides propulsion, called the ExoSym-- a custom hybrid orthotic-prosthetic device made only in Gig Harbor, Washington, designed to help people like me who suffer from severe limb dysfunction. After submitting my intake forms and medical history, I received the exciting news that the clinic accepted my case!
The cost of the custom ExoSym brace, along with the necessary fittings and physical therapy at the Hanger Clinic in Washington is $9,000. They operate on a private pay program as they don't participate with insurance due to the low rate of reimbursement.
Any donations would go directly towards:
Custom ExoSym brace: $7,500
Fittings and adjustments: $1,000
Physical therapy sessions: $500
Getting the ExoSym requires 2 trips to Washington, the first of which is scheduled for August 27th. During this first visit, my leg will be casted to create my custom device. The second visit will include fitting of the device and a functional training program with physical therapy to learn how to walk with the device.
If you are unable to donate, sharing this campaign with your network would mean the world to me.
Thank you for taking the time to read my story and for considering a contribution.
With Gratitude,
Lauren Schoeller
Organizer
