Measles Family

I became depressed and developed an eating disorder when I was fourteen. Then in the fall of 1995, life as I knew it changed forever. I was sixteen and a cheerleader for my local high school when I began experiencing problems walking. As months went by, symptoms progressed. I started seeing specialists and undergoing tests. Finally, in the summer of 1996, I was diagnosed with Krabbe disease. I was told that the disorder was fatal and that my timeline was five to ten years to live. My family was advised to take me home and keep me comfortable, while my body continued to deteriorate into a vegetative state until I eventually died. This news saddened me, of course. As I became worse and could no longer cheer, I started to rebel against reality. I began drinking heavily. Then, after graduating in the summer of 1997, I felt a calling.

One day, I opened my Bible, and as I set there turning through the pages, I was led to verses about hope and healing. I broke open. Open to finally letting the Lord in. I started praying harder than ever before. I could feel God making a way. In October, my aunt asked me to come to her church and let the elders pray over me. I went without hesitation. Two weeks later, my neurologist called with news that a possible treatment had been found. A bone marrow transplant could stop the progression of the disease.

In February of 1998, I went to undergo a transplant. It was not an easy decision to make, as I was told there was a fifty/fifty chance of survival. God didn’t fail to send me signs for strengthening my faith, tho. I knew it was meant for me to have the transplant and the Lord would bring me through it. And that is exactly what happened.

Several years later, I was given a chance to help others like me. Doctors had found that children with the most common form of Krabbe disease, the Infantile Form, could survive if the disorder was diagnosed before they were symptomatic. This would require babies to be tested for the disease at birth, also known as newborn screening. Each state in the United States has its list of diseases they test infants for at birth. My home state of Tennessee did not screen for Krabbe disease, so in December 2010, I set out to get a bill passed to add the disorder. A couple of other families joined me in the fight, and finally, in the spring of 2015, legislation was passed. Today, under the Mabry Kate Newborn Screening Act, every baby born in Tennessee is screened for Krabbe disease at birth.

It has been twenty-four years since my bone marrow transplant, and the progression of the disease continues to be halted. Though I’m in a wheelchair, I am alive. Life after a transplant isn’t easy. Through the depression and other mental issues, the Lord keeps strengthening me, though. With Jesus, I continue overcoming battle after battle.

My life may not be what I dreamed, but with the Lord, it is what it’s meant to be. It’s a gift that only I can live with Him. I see that now.