“My Roller Coster Ride though Mito”

The story of Rachael

For most people riding roller coasters are fun, but when you have mito it’s a challenge. At age 16, I started my journey. I was scared. I had no idea what mito was. I had test after test, and what I thought would take forever lasted a lifetime.

I started out using a walker, and then the lifelong journey began. I was using my walker just fine until one day I started to lean to my left side. From that day on, I missed a lot of school. I went to doctors’ appointments and specialists but no one could figure out what was wrong with me. It was not until six months later, I heard of the devastating disease called mitochondrial or mito for short. I was torn. I did not know what to think. I had never heard of such a long disease before.

It all happened one day at school when I went swimming in a very cold pool, and I had a big seizure. I was walking to school that day, and I came home by ambulance. Then, I learned I was paralyzed from the waist down. I needed to be in a power wheelchair. It was hard. I needed help with everything from bathing to eating, etc. I was a vegetable for six years. The doctors said I would never walk again. I was not going to listen to that.

Several years went by. On one very special Thanksgiving I said, “Mom I need to move a toe.” So, I did! I got stronger from then on. I practiced standing from my power wheelchair with my seat belt on, of course. I practiced some more for a few seconds a day. Then a miracle happened! I was walking people!

A dream came true! That was the happiest day of my life. I was in an upright position. I was on my feet. I was just part of the crowd again! I did not have to have a wheelchair holding me back anymore. I was finally able to enjoy life again, and I was able to go places where a wheelchair would be impossible.

Now I am 27 and I have a volunteer job fundraising for the UMDF. I also have an in-home business called, Passion for Fashion, where I make and sell things out of duct tape, like purses and wallets, and other cool stuff.