ABOUT JOSHUA

Joshua was born June 2008.

Since that time he was diagnosed with SMA (Spinal Muscular Atrophy). This condition is typically fatal, depending on whether a child is Type I, II, or III. Currently, a specialist who has studied the disease for the past decade believes that Joshua has the most severe type. He is home, on 24hr ventilation, has a Trach, G-tube and has lost all his movements except his left index finger. However, even with the above surgical procedures much is still lacking to assist him with his daily life functions.

Currently there is no cure for SMA, just clinical studies and non in Florida. Studies are available in Utah, Philadelphia, Virginia, California, New Jersey, Maryland, Texas and other cities; it is hoped that with the help of Congress the door will be opened for funding to other States and all research will be governed under the FDA. The SMA Treatment Acceleration Act was introduced in April 2009 in the House of Representative and May 2009 in the Senate of the United States of America.

Joshua spent 5 months in the Hospital; our biggest challenge was not with coping with the disease, but with the lack of knowledge by the medical community. We believe with more knowledge of current recommended care for SMA patients, Joshua would be stronger than he is today. It is therefore our determination to help bring more awareness of the disease to the medical community and parents in this region.

Joshua lived for 5 beautiful years; while the disease took his motor skills it never took his mind, smile, joy, personality, or his love for the world. Joshua was confined to a bed and a wheel chair but we know it was because we decided to let him go everywhere we went that kept his spirits and his mind focus along with God’s love. We took Joshua to the Jacksonville Zoo, Sea World, the Florida Aquarium. On October 12 at 12:25am Joshua became our Angel.

Joshua Joel Fletcher taught us to love unconditionally, and to give thanks for what we have, not to dwell on what we cannot change or control. It is with this insight we move forward.

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