Allison's Leg Braces for CMT
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My name is Allison, I'm a 27-year-old diagnosed with Charcot-Marie-Tooth Disease, a genetic disorder that limits the functionality in my hands and feet.
For a fuller story of my life with CMT, visit my blog at: Coming to the Terms.
Last summer my symptoms worsened to the point that my doctor recommended I use a pair of ankle-foot orthosis, which are common for people with nerve disorders and limited foot-function. I can no longer lift my foot past a 90-degree angle and my toes drop so I often trip over my own feet.
This video is not me, but to give you an idea this is exactly how I walk without braces:
Over years falling has lead to scarring on my knees and ankles, and without leg braces I trip and fall once or twice a week, sometimes more. Falling is something that happenes to everyone, but repeated it becomes a hidden fear, a constant stress, and I realized I would often opt to drive a few blocks or stay inside rather than walk anywhere and risk falling in the street.
At first I was resistant to orthosis because my left food is misshapen and it bears weight poorly after numerous injuries, including a tendon tear. Shoes are often uncomfortable and cause blisters, pinching and bleeding. I was afraid a pair of plastic orthosis wouldn’t fit the shape of my foot or correct my weight-bearing posture, and end up causing more pain than help.
But I was turned on to the Helios AFO Braces, which are custom-made to correct posture and foot placement. They completely restore my walk to a normal gait and cause no rubbing or blistering. They are the most comfortable “shoes” I’ve ever owned.
In August me and my mother flew out to Las Vegas so that Mitch at Ortho Rehab Designs could mold me a pair of Helios. - Ortho Rehab owns the patent on the Helios, and they can only be aquired through their office in Las Vegas. - I cannot adequately express how much these braces have changed my life. I don’t think I realized how afraid of walking I had become.
However, the braces cost $13,000 and the manufacturer requires the cost up-front. My parents were able to pay for the initial bill, but they are just middle-class people and my mother hopes to retire this year. I know money is a concern for them and while they were prepared to cover the full cost of the braces, it was not an easy thing.
When we returned from Vegas I submitted an insurance claim for reimbursement, but it was denied. I appealed the denial and received only $1,700 to cover the total $13,000 cost. I was hopeful I’d get more, but I did not.
The money raised through this campaign will go directly to my parents, for whose unending support I can never fully express my gratitude.
It’s hard to express how bad things had become, or how the stress beat me down daily. For people who can walk without trouble it’s hard to say what it’s like to slowly lose that ability. You don’t even notice until it is gone. How can two plastic shapes fix that fear, alleviate that stress, give you back and entire life you didn’t even know you’d lost?
After I first walked in the braces, my mother and I both wept. She told me she hadn’t seen me walk so easily since I was a child. Please help me show my parents just how much I appreciate their support, not just financially, but emotionally and physically. I can never pay them back for the time they spent in by my side in doctor’s offices, or with me as I vented my fear and frustration, but I can pay them back at least a little bit for this.
For more information on CMT visit: CMTAssociaton USA
For a fuller story of my life with CMT, visit my blog at: Coming to the Terms.
Last summer my symptoms worsened to the point that my doctor recommended I use a pair of ankle-foot orthosis, which are common for people with nerve disorders and limited foot-function. I can no longer lift my foot past a 90-degree angle and my toes drop so I often trip over my own feet.
This video is not me, but to give you an idea this is exactly how I walk without braces:
Over years falling has lead to scarring on my knees and ankles, and without leg braces I trip and fall once or twice a week, sometimes more. Falling is something that happenes to everyone, but repeated it becomes a hidden fear, a constant stress, and I realized I would often opt to drive a few blocks or stay inside rather than walk anywhere and risk falling in the street.
At first I was resistant to orthosis because my left food is misshapen and it bears weight poorly after numerous injuries, including a tendon tear. Shoes are often uncomfortable and cause blisters, pinching and bleeding. I was afraid a pair of plastic orthosis wouldn’t fit the shape of my foot or correct my weight-bearing posture, and end up causing more pain than help.
But I was turned on to the Helios AFO Braces, which are custom-made to correct posture and foot placement. They completely restore my walk to a normal gait and cause no rubbing or blistering. They are the most comfortable “shoes” I’ve ever owned.
In August me and my mother flew out to Las Vegas so that Mitch at Ortho Rehab Designs could mold me a pair of Helios. - Ortho Rehab owns the patent on the Helios, and they can only be aquired through their office in Las Vegas. - I cannot adequately express how much these braces have changed my life. I don’t think I realized how afraid of walking I had become.
However, the braces cost $13,000 and the manufacturer requires the cost up-front. My parents were able to pay for the initial bill, but they are just middle-class people and my mother hopes to retire this year. I know money is a concern for them and while they were prepared to cover the full cost of the braces, it was not an easy thing.
When we returned from Vegas I submitted an insurance claim for reimbursement, but it was denied. I appealed the denial and received only $1,700 to cover the total $13,000 cost. I was hopeful I’d get more, but I did not.
The money raised through this campaign will go directly to my parents, for whose unending support I can never fully express my gratitude.
It’s hard to express how bad things had become, or how the stress beat me down daily. For people who can walk without trouble it’s hard to say what it’s like to slowly lose that ability. You don’t even notice until it is gone. How can two plastic shapes fix that fear, alleviate that stress, give you back and entire life you didn’t even know you’d lost?
After I first walked in the braces, my mother and I both wept. She told me she hadn’t seen me walk so easily since I was a child. Please help me show my parents just how much I appreciate their support, not just financially, but emotionally and physically. I can never pay them back for the time they spent in by my side in doctor’s offices, or with me as I vented my fear and frustration, but I can pay them back at least a little bit for this.
For more information on CMT visit: CMTAssociaton USA
Organizer
Allison Fischbach
Organizer
Baltimore, MD