On October 8, 1997, we became the proud parents of Haley Christiana Mitchell. She was a beautiful baby girl and all appeared normal. In the weeks that followed, we gradually became concerned about Haley's motor skill development and the fact that she was not very active.
At Haley's four-month checkup, she was referred to a child neurologist who diagnosed her with Spinal Muscular Atrophy Type I, a deadly neuromuscular disease that deteriorates the spinal cord cells that control muscular function. The normal life expectancy is one to two years. Respiratory complications are most often the major problem for this incurable disease.
Haley is now 2 years and 10 months old, which is a major accomplishment in itself. She is weaker now, with her only physical movement in her hands and her feet. She is mentally sharp, and despite her daily challenges, she generally enjoys her life surrounded by her family, friends and nurses. Realizing that she could be taken from us at any time, we view each day as a gift and enjoy her immensely. We have been richly blessed by having Haley in our lives and the lessons she has taught us.
We have found tremendous support through Families of SMA, a non-profit organization that provides support and education to affected families and raises desperately needed funds for national research efforts. Thanks to FSMA, much progress has been made toward a cure and treatment for this terrible disease. Just in the past year, research scientists have been successful in developing a process to effectively stop the disease in a mouse study and are confident that they can duplicate this process in humans in the near future.
Research and progress costs money. As Haley's family, we humbly ask that you consider supporting our efforts through a financial contribution. Although we pray each day for a miracle for our daughter, we realize that a cure may still be too far off to benefit Haley. It is our hope that the efforts of Families of SMA will soon provide a cure so that future children might be spared from this affliction. We sincerely appreciate your support.
Jeff, Valerie, Kelsie and Haley