In August Colton spent a month at Yale New Haven's Children's Hospital, being treated for double pnuemonia and a collapsed lung. During his stay at Yale, we began addressing some concerns with his muscular development. the medical diagnosis was confirmed by genetic testing that Colton has SMA type 1 a degenerative disease.
The reality of this diagnosis has made life changes for Colton and his family, His mother took leave from her job to be by his side living in the hospital with him, and now caring for his every need every day. Colton now travels weekly to Columbia Presbyterian Hospital in New York to participate in a clinical trial of a very promising treatment. This will be ongoing for at least a year plus.
Colton's home care requires medical devises, treatments and therapies that are ongoing and requires alot of support from family and friends.
All funds will directly support Colton's care, including transportation, travel expenses, homecare equipment and supplies. Any unused funds will be donated in Colton's name to support SMA research.
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Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease characterized by muscle atrophy and weakness. The disease generally manifests early in life and is the leading genetic cause of death in infants and toddlers. SMA is caused by defects in the Survival Motor Neuron 1 (SMN1) gene that encodes the SMN protein. The SMN protein is critical to the health and survival of the nerve cells in the spinal cord responsible for muscle contraction (motor neurons).
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