Race For A Cure.
I had big dreams and huge goals as a little girl growing up. But something entered my life and blocked me from them. I was having difficulties with growth and walking. I had many health issues and no one could figure it out. My mom had taken me to so many doctors and all they wanted to do was experiment on me. I have had several surgeries and it has been a challenging as well as a traumatizing journey.
At one point, I was walking around being a normal kid. Then suddenly I was learning to adjust to a wheelchair, a cane, crutches, and then a walker.
Mucopolysaccharidoses or MPS was the diagnosis that was given to me although they still were not sure. MPS is a genetic lysosomal storage disease caused by the body’s inability to produce specific enzymes. It is a rare and life threatening thing. I don’t call it a disease because I am not claiming it. Years later, I am still here and living my life!
In January of 2016, I had a bad fall and discovered that I lost my ability to control most of my body. My mom and I finally received a miracle meeting with my Neurologist. I was told that my body was shutting down based on not having the enzymes needed to support my developmental growth.
We prayed hard asking for answers and that was when the treatments came in. I got excited to hear about them but I fell apart when learning that it was not short term. It would be for the rest of my life. Once a week for 5 hours I am receiving the treatments.
Now, over 4 years later, I have gained some weight back. I have gained strength in my organs to the point that I can hear my heartbeat again. Everything is getting better and better. I am grateful and still determined to walk again. It’s a slow process but I am going to get my independence back. I am God’s special gift, my life is unique and I am truly grateful that I going to the fullest. I am grateful for the treatments. We truly need a cure. So many lives have been taken away.
Thank you for reading my story as well as giving a prayer for a cure. My name is Keena. I have MPS, MPS does not have me!
Many Blessings to you all!