Madison's Story, by Wendy Tierney

In life we are faced with challenges that make us stronger and meet people who inspire us. My daughters’ stories are examples of both challenge and inspiration.

My first daughter, Emily “Grace” was born on September 14, 2000. She was picture perfect – everything as it should be – so we thought. Around three months of age, Grace began having feeding issues. It took her two hours to drink two ounces of formula. We began what we now know is a common journey for parents of a child with Krabbe's disease.

For almost three months we were told Grace had reflux and that she didn’t like the formula; so they had us try a variety of different formulas. During this time we noticed she was not reaching milestones, but instead losing them. As Grace began losing these developmental milestones, we finally were able to get an MRI that gave us the Krabbe's diagnosis.

By the time Grace was nine-months old, she was no longer smiling, playing, or eating. She began crying around this time on a continuing basis. The only time she didn’t cry was when she was sleeping. This lasted about 2 months. Then one day she quit crying. From that day on, she never had what seemed to be 'purposeful' abilities. She required 24/7 care. Grace fought for her life everyday.

Most babies born with Krabbe's disease only survive until their first birthday. Grace was almost 3½ years old when she passed away; however, she had a quality of life that no child deserves.

When my second daughter was born, we were given the devastating news that she too had Krabbe's disease. There is hope, however, in Madison’s story. Since Madison was diagnosed at birth, she had an opportunity for a life that Grace never had. Madison was able to receive an umbilical cord blood stem cell transplant before she was a month old. By receiving the stem cell transplant it stopped the progression of the disease. So even though Madison has Krabbe's disease, she doesn’t have any symptoms of the disease. Madison is miraculous. She is an inspiration to all hear her story and meet her. Madison’s cognitive development has not been impaired in anyway. She had some gross motor skill delays due to the use of steroids as part of the transplant treatment. However, as of today, she has reached age-appropriate skills in this area.

On May 31, 2009, Madison will turn 5 years old. She is currently in preschool and will begin Kindergarten in the fall. She participates in gymnastics and swimming. Madison can count to 100, recite her ABCs, writes her first and last name, loves to sing, and rules our house. Anyone who meets her would never know she has a horrible disease that took the life of her older sister.

If Madison had not received her stem cell transplant within the first month of her life, her story would have ended at tragically as Grace's. Transplant for newborns with Krabbe's disease is their only hope for life.

For Madison’s journey through transplant and updates on how she is doing, go to www.caringbridge.org/wv/madisonfaith

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