Support Rick's Journey to Mobility and Safety

Hi there,

My name is Ella and my family and I are looking for assistance in helping raise money to help my Dad. My Dad's name is Rick. He is the strongest and most giving person I know, but he has been given the short end of the stick. He has muscular dystrophy, specifically limb-girdle type 2L. Muscular dystrophy is a genetic disease that deteriorates the person's muscles over time. With my Dad's specific type of muscular dystrophy, he is losing and has already lost lots, of muscle function in his legs, hips, and now his arms. Muscular dystrophy doesn't have much research around it or a cure. He got his diagnosis when my sister and I were young and it has progressively gotten worse. It has been tough to watch as we grow up our father no longer be able to do the things that bring him joy and things a non-disabled father wouldn't even have to think twice about being able to do. He has falls that have caused him multiple hospital visits and scares for our family, these happen from his legs just giving out on him because he no longer has the muscle strength to walk, or even stand like someone without this disease would be able to. Throughout this time he has been dealing with this disease and its progression he has done his own research on solutions due to lack of assistance from the medical system. Through his research, he found something called the Ottobock C-Brace. The Ottobock C-brace is an advanced microprocessor-controlled leg orthosis that would help with his everyday movement, stability, and most importantly safety. The issue with this brace is that it is very expensive, and on top of that, he would need one for each leg. When he first heard about this brace he automatically requested a trial from the company. When he attended the trial it went extremely well, he reached out to his doctors to ask if they would be able to help him get these life-changing braces, and the company reached out to our insurance as well letting them know he is a perfect candidate for these. Our insurance automatically declined the braces for him without even any consideration. One person even told him on a phone call, "Let's put it this way, those braces are Ferraris and we don't pay for Ferraris.". They suggested other braces but the braces they have given him now have not improved his quality of life or even fall amount at all. He and his Doctor requested another trial through Kaiser hoping that if it was done through our insurance and provider that hopefully they would even just consider it. I went with him to this trial and witnessed the difference that even just the big clunky trial braces can make for him. It brought me to tears just being able to see my father sit down normally, walk normally, have leg strength back, and even just have a genuine smile on his face. Our insurance then still turned him down with a trial through them and with his doctor's recommendation. After this, he took it to the state for an appeal. We had hoped at least the state would be willing to help with this and get him this life-changing technology, but we finally received a response and his appeal was denied. This has gone on for two years now, the push and pull of my father's will and hope for this and the run around on the future of his mobility. He is never one to complain or want to "bother" anyone with what is his daily struggle, which is not only physical but also mental. But it has gotten to the point where he needs extra help with just everyday moving around. I worry about what some might think are frivolous things like my father not being able to walk my sister or me down the aisle when we get married, or even just worry every day while we're away at college that he will have a fall and we won't be there to help him or it'll cause damage to him that simple stitches won't fix. He has been so strong through all the years dealing with this and he doesn't deserve to keep living life in this condition forever. Any donations made will make us forever and eternally grateful. Anything that helps us get him one step closer to living a better quality of life with less pain and more mobility is something priceless.

The picture I chose is a photo of my Dad from the day I attended the trial with him, he is wearing the trial brace.

Here is also a link to the Ottobock C-brace website for those interested in reading about it themselves.

https://www.ottobock.com/en-us/c-brace