Lane Glaze

Help Lane Get His Wheels

My name is Lane Glaze and I am living with a progressive neurological disorder called Friedreich’s Ataxia. I was diagnosed when I was 7 years old, and since then things have gradually gone downhill. When I was younger, I was told that I wouldn’t live to be 18…I’m now 30 still fighting all sorts of obstacles and demons. I used to be very self conscious about my illness, but I have come to terms with the fact that I am only human and everyone has flaws. Always keeping in mind “it could be worse”. No matter how bad things get, there are always positive aspects to focus on. of course, there are going to be bad days when dealing with a rare disease, such as FA, but I try my best to look at the bright side of things and strive on improving myself. There is without a doubt someone out there who is worse off than me and I should remain grateful for the abilities and skills I still have.
I was fortunate enough to be able to walk until I was 16. My second day of sophomore year of high school was the day I had to start using a wheelchair. At first I hated it, but at the same time I was relieved in a , because I had a new freedom to be able to move around the hallways without tripping or stumbling into people. Now I’m used to the wheelchair, but other problems aside from my ability to walk have come into play. My balance and coordination are slowly getting worse and my voice is starting to slur and crack. Normal everyday tasks are becoming difficult. Things such as taking a shower or even putting on shoes. On top of that, I have mild neuropathic pain throughout my body almost daily. These challenges are often overwhelming, but I try to focus on the positives of life. I go to physical and occupational therapy twice a week, and I also work on improving at the gym on my own. I’ve changed my diet and am still working on my sleep habits so that I can feel my best every day I do my best, and that s all that is really required in this life.. You don’t have to be perfect to be OK((:

Transportation is an obstacle that I’m really struggling with. Being in a power chair, makes it impossible to go places with friends and family. The only way to transport my chair is with a wheelchair conversion van or bus. There have been multiple times I have had to ride the public bus somewhere, mistook the bus schedule, and have been stranded downtown or wherever I was at a bus stop all night until the route started again the next morning.There are no accessible Uber or Lyfts in Louisville so it’s not easy to go places without my own conversion van.

There is not yet a cure , but recent advances in neuroscience and medicines have developed a new therapeutic drug which increases levels of the lacking frataxin protein and halt progression. That would mean I finally get some relief and potentially some improvement from the condition I’ve been sparring with since 93!! I’m seeing a small glimmer of hope, which hasn’t been visible for quite some time now.

There are more upcoming clinical trials and studies in the US to research other beneficial therapies and treatments for people with ataxia. I enrolled myself into one of these studies happening in the upcoming year. The facility there has a shuttle but I’m worried about the personal errands that might need running while I’m there for 30 days. I do doubt public transportation for individuals alike. If I had my own accessible wheels, there wouldn’t be a bead of sweat about it. But
it is what it is
These things cost an arm and a leg. Just the conversion alone costs 25K.
Plus the cost of the unmodified vehicle itself. And Medicaid won’t cover this although it quite literally is a medical necessity!

I’ve also been doing what I can to save some of my own money to push towards my goal. I make and sell art With intentions of getting a modified vehicle, when I find the time and opportunity to do so but there is no way I could afford it on my own. A wheelchair accessible vehicle would be life changing. I would love nothing more than to have my sense of freedom back. Take a minute to read and share my story. Donate if you can. Any efforts to help are greatly appreciated. You would be saving a life.

Family and friends of Lane Glaze are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Lane has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!