Miracle for Madison and Friends
by Michelle Worrellia
About the Garments
On February 4, 1997, we were blessed with the birth of our second child, Madison Rose. She came into this world like any other child — screaming and kicking, pink and rosy. She was our very special little girl. Little did we know just how special she would be. Beginning around four months of age, we noticed that Madison was having difficulty accomplishing normal physical developmental skills. Soon after, Madison was diagnosed with a relatively unknown genetic neuromuscular disease called Spinal Muscular Atrophy (SMA). SMA is a group of inherited diseases that destroy the nerve cells called motor neurons controlling voluntary movements such as crawling, walking, head and neck control and swallowing.
Madison was diagnosed with the most severe and life-threatening form of this disease, Type 1, also known as Werdnig-Hoffman disease. Based upon this original diagnosis, she was not expected to live past the age of two. As we have learned more about this disease, we believe her chance of survival is much better than the original diagnosis. Dr. John Bach, most famous for his work with the actor Christopher Reeve, has given us real hope that Madison can live a comfortable, happy life well beyond the age of two.
Madison has fought through some very tough times in her short life. We expect she has more battles ahead. Yet, she still has some movement in her arms and legs and can laugh, sing, talk and dance. But her twinkling eyes tell the real story — they are big, bright and beautiful and mirrors of life, hope and dreams.
Miracle for Madison & Friends is dedicated to raising money to help Ohio State University researchers find a cure for Spinal Muscular Atrophy (SMA).
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