My Story
I was sixteen years old in 1995 when I became sick with late onset Krabbe Leukodystrophy. It was my junior year of high school when I started noticing a limp in my left leg. One night while cheering at a basketball game I began shaking. I was experiencing spasms that I could not control. I went to see several doctors before finding one who was determined to find the correct diagnosis. Dr. James Hora diagnosed me with Krabbe Leukodystrophy in 1996. The news was confusing and devastating to me and my family. This is a very rare disease especially the late onset type. We were told by some doctors that nothing could be done and I would eventually progress into a vegetative state. My family and I did not give up hope. A year passed, after many prayers and lots of determination, I finally received good news from Dr. Hora. He had discovered that a treatment could be possible to stop the disease from progressing. My family and I went to New York University to see if I qualified for the treatment. After numerous tests doctors concluded that I was a great candidate for a bone marrow transplant. A perfect match to my bone marrow was found through the National Bone Marrow Registry. In February 1998, I traveled to Minneapolis, Minnesota to undergo the transplant.
Months before traveling to Minnesota, my insurance company informed me that the transplant was considered experimental and they would not cover the procedure. Fear of not being able to afford the transplant expenses took a toll on the family. My grandmother contacted WRCB Channel 3 News about featuring my story on Russell Martin's 3 On Your Side Report. Channel 3 and Russell Martin agreed to interview my family and I. After my story aired and Mr. Martin had contacted the insurance company, a negotiation between the hospital (Fairview Medical Center) and the insurance company (Blue Cross Blue Shield) was reached so that the transplant would be covered. Channel 3 continues to air updates of my story today.
My mother and I arrived in Minneapolis on February 1, 1998. My hopes were high, but feelings of uncertainty, sadness, and fear overwhelmed me. Doctors had given me a 50/50 chance of survival. I began to have second thoughts about proceeding with the transplant. After my mother and I talked I decided to continue with the treatment. The first week consisted of transplant preparations. I was admitted into the hospital the following week. I received two days of chemotherapy and three days of total body radiation in order to replace my marrow with the donor marrow. During this time I was very sick and recall few memories. I was scheduled to receive the donor marrow on February 19. The marrow arrived after midnight and the nurse began the infusion. I remained in the hospital for thirteen more days. I was then allowed to stay at the Ronald McDonald House with my mother. We commuted to the bone marrow clinic most every day for blood work and other tests. I continued to stay under the care of my doctor, Dr. Charles Peters. I had to remain in Minneapolis for at least 100 days post transplant. On June 4 my mother and I returned to Tennessee. Dr. Timothy Spitler agreed to monitor my progress. I returned to Minneapolis for a six month, one year, and five year checkup. Tests showed that the transplant was 100 % successful and that the progression of the disease was stopped. I now continue to have yearly checkups with Dr. Spitler.
As months passed following the transplant, I began to think about the person that donated the bone marrow that saved my life. After a year post transplant I was informed of the individual's identity. His name is Greg and he lives in Wisconsin. In 2004 I was contacted by the Montel Williams Show to share my story with his viewers. My husband and I traveled to New York City in October to film an episode. At the end of the interview Montel surprised me by having Greg there to meet me. We continue to keep in touch today.
My life changed greatly when I became sick. I have experienced many emotions both good and bad. I am challenged daily both physically and mentally. Despite my hardships and limitations, I know I am blessed.
Months before traveling to Minnesota, my insurance company informed me that the transplant was considered experimental and they would not cover the procedure. Fear of not being able to afford the transplant expenses took a toll on the family. My grandmother contacted WRCB Channel 3 News about featuring my story on Russell Martin's 3 On Your Side Report. Channel 3 and Russell Martin agreed to interview my family and I. After my story aired and Mr. Martin had contacted the insurance company, a negotiation between the hospital (Fairview Medical Center) and the insurance company (Blue Cross Blue Shield) was reached so that the transplant would be covered. Channel 3 continues to air updates of my story today.
My mother and I arrived in Minneapolis on February 1, 1998. My hopes were high, but feelings of uncertainty, sadness, and fear overwhelmed me. Doctors had given me a 50/50 chance of survival. I began to have second thoughts about proceeding with the transplant. After my mother and I talked I decided to continue with the treatment. The first week consisted of transplant preparations. I was admitted into the hospital the following week. I received two days of chemotherapy and three days of total body radiation in order to replace my marrow with the donor marrow. During this time I was very sick and recall few memories. I was scheduled to receive the donor marrow on February 19. The marrow arrived after midnight and the nurse began the infusion. I remained in the hospital for thirteen more days. I was then allowed to stay at the Ronald McDonald House with my mother. We commuted to the bone marrow clinic most every day for blood work and other tests. I continued to stay under the care of my doctor, Dr. Charles Peters. I had to remain in Minneapolis for at least 100 days post transplant. On June 4 my mother and I returned to Tennessee. Dr. Timothy Spitler agreed to monitor my progress. I returned to Minneapolis for a six month, one year, and five year checkup. Tests showed that the transplant was 100 % successful and that the progression of the disease was stopped. I now continue to have yearly checkups with Dr. Spitler.
As months passed following the transplant, I began to think about the person that donated the bone marrow that saved my life. After a year post transplant I was informed of the individual's identity. His name is Greg and he lives in Wisconsin. In 2004 I was contacted by the Montel Williams Show to share my story with his viewers. My husband and I traveled to New York City in October to film an episode. At the end of the interview Montel surprised me by having Greg there to meet me. We continue to keep in touch today.
My life changed greatly when I became sick. I have experienced many emotions both good and bad. I am challenged daily both physically and mentally. Despite my hardships and limitations, I know I am blessed.
