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Help Karon Take the Next Step — Literally and Figuratively
After years of surgeries and setbacks from severe rheumatoid arthritis, I’m facing the painful possibility of losing my only remaining leg. But a new solution — the ExoSym — could change everything. This specialized brace system could give me the stability and strength to walk again, avoid another major surgery, and keep being the active mom, wife, and disability rights advocate that grants me the opportunities to access my community.
We are fundraising to cover the travel, fitting, and rehabilitation costs of the ExoSym so I can stay present in my family’s lives, continue my work helping others, and reclaim the simple, extraordinary gift of living fully again.
My Story
Hi, I’m Karon, and I’m asking for help to restore my mobility, independence, and ability to keep living — not just surviving — after years of fighting the damage caused by end-stage rheumatoid arthritis.
I’m already a right below-knee amputee after a failed attempt to surgically reconstruct my right foot and ankle. The same surgeries were done on my left side, and now I’m facing the same heartbreaking collapse — the ankle joint giving way, bones in my arch breaking against each other, and tendon grafts tearing apart.
Just days after all three of our sons left for college this fall, the pain became unbearable. I returned to my surgeon and learned how urgent things had become.
After 35+ years of living with severe rheumatoid arthritis, I’ve learned how to adapt and persevere through pain. But this is different. Each step now feels like a 5-alarm fire, with relentless breaking that dictates every part of my day — how I engage with friends and family, how much I can work, time with my husband and friends, and even my ability to safely stay in our home.
Until recently, I was told I had only two options:
- A Total Ankle Replacement (TAR) with a 35–50% chance of losing my leg, or
- Go straight to amputation.
Then, a third opinion emerged upon my 2nd opinion consult at Vanderbilt University Hospital! I was advised to:
“Exhaust every possible alternative before another surgery.”
That alternative is the ExoSym — a custom-built, exoskeletal brace system that could give me the stability, strength, and freedom to walk again without risking another amputation. ExoSym in the News
⚖️ My Three Options
1️⃣ High-Risk Total Ankle Replacement at Duke University Hospital
12–24 month recovery
- No surgical repair possible for the midfoot or forefoot
- 35–50% chance of limb loss
- Multiple 8-hour drives and extended stays to Duke University Hospital for pre-op, surgery, and follow-up care
- 6–11 weeks of 24/7 care while unable to bear weight on either leg with full recovery taking between 1-2 years.
- Artificial ankle lifespan: 6–10 years requring the same operation
2️⃣ Below-Knee Amputation (0 True Legs)
- A prosthetic could function better than my current foot, but...
- Enormous emotional, physical, and financial costs
- Increased fall risk that could endanger my right total elbow replacement
- Lifelong prosthetic, wheelchair, and accessibility expenses
- 6–15 weeks homebound for recovery with need for 24/7 caregiving
3️⃣ The ExoSym at Hanger Clinic, Gig Harbor, WA
What is it?
- A custom exoskeletal brace that stabilizes the foot, ankle, and leg
Why an ExoSym?
- Delay or prevent further surgery for 6–10 years while preventing knee and hip strain caused by ankle collapse
How to get one?
- Travel to the only clinic equipt to make the ExoSym in Gig Harbor, WA
- Spend two-weeks in Washington for prescribed fitting, fabrication and initial gait training - Similar to the prosthetic process I’ve gone through with my right leg.
What it takes?
- Once home, I will need six months of physical therapy (insurance will cover 30 visits a year.
Is this what hope feels like?
- The ExoSym is my only option that's offers a chance to walk, stand, and move through life with far less pain and greater independence.
- Top notch surgeons have made it clear, a total ankle replacement will only prevent my ankle from getting worse. The destruction in my mid and forefoot will worsen, and the replacement comes with an abunadance of restrictions.
Why This Matters
We are not nieve to the countless needs in this world right now. I am fighting for the opportunity to remain as an active participant in helping others. My husband and I have three sons who just started college. We’re so proud of them — and I want to stay active and present in their lives: showing up for them now and throughout their lives, traveling to see them, and being part of all the moments that make our family us.
But this isn’t only about mobility. I have three goals guiding every decision right now:
1️⃣ To remain an active, engaged mom, wife and friend — not watching life from the sidelines but participating fully in it.
2️⃣ To continue working and growing my new venture, Disability Advocacy Solutions , which helps other families navigate complex disability systems. My work gives purpose to everything I’ve survived.
3️⃣ To reclaim the gift of truly being alive, not just enduring pain day by day. I want to live with energy, presence, and gratitude — not fear, immobility, and exhaustion.
The week I learned how damaged my foot and ankle were was also my first week back to work part-time after nine months of recovery from three major surgeries in 2023–2024. I fought hard to walk again, to hope again, to belive that I had something to offer the world again — and I’m ready to fight for the chance to keep walking forward.
Choosing the ExoSym isn’t just about avoiding another surgery. It’s about protecting our family’s stability, preserving my independence, and holding onto the life I’ve worked so hard to rebuild — as a mom, wife, business owner, and survivor who still believes in what’s possible.
Thank You!
Every donation, share, and word of encouragement helps me take one more step toward recovery, independence, and hope. I’ve learned that healing isn’t just about medical procedures — it’s about community, compassion, and believing together that something better is still possible.
Thank you for helping me fight for mobility, for family, and for life beyond survival.
With gratitude,
– Karon and Family
How the Funds Will Be Used
How You Can Help
Every contribution, no matter the size, will help me move toward a future with greater mobility and less pain.
If donating isn’t possible, please share this campaign — awareness is just as powerful.
From the bottom of my heart — thank you for helping me take the next step forward in strength, stability, and independence.
— Karon & Family
Organizer
