Tucker Townsend, son of Christopher and Leigh Townsend, is a 11-year old boy with Mitochondrial Disorder. He was born at 27 weeks gestation, weighing just 1 pound and 11 ounces. Tucker spent over 8 months in the NICU at Woman's Hospital, and his parents took him home with a tracheotomy tube and ventilator. He had home nursing for 12 hours a day until he was 3 years old. Tucker also had a feeding tube for nutrition as he ate less than 1% of his food by mouth.
Tucker has many health problems that cannot be explained by his prematurity, such as developmental delay, autistic characteristics, GI issues, and microcephaly (small head). These issues led his parents to seek out Mitochondrial testing, which led to a diagnosis of Mitochondrial Depletion Syndrome in July 2010. This means that at a basic cellular level, Tucker's body does not work the way it is suppose to, and his cells do not have enough energy to perform many functions. Tucker's Mito has manifested in his neurological symptoms, but there is a chance that it could affect his heart, liver, kidneys, or other systems in the future. Mitochondrial Disorder is considered life-threatening and his prognosis is uncertain.
Tucker attends Oak Grove Primary in a special needs classroom, where he works hard and enjoys school. Thanks to Fishing for Tucker, Tucker receives 15 hours per week of Applied Behavior Analysis (ABA) therapy in addition to school. Therapists come to our home to work with a proven program for kids with autism and other delays.
Tucker is very frustrated because he cannot express himself, which leads to him grinding his teeth (which will have permanent damage if he continues) and also pulling his hair and needing anxiety medicine. The more that he can talk, the less that he displays these other behaviors and needs the interventions. The ABA Program started in June 2011, and this program has completely changed Tucker. His behavior has improved dramatically, and he has started talking all the time!! The ABA Program has allowed us to "unlock" the Tucker that has been there all along.
Because of Fishing for Tucker, we have been able to fly in an ABA Feeding Specialist from Philadelphia several times a year who has helped Tucker go from eating no food by mouth to eating 100% by mouth. Thanks to this program, in 2014 Tucker got his feeding button removed. He had 3 surgeries in 2014, as his body has a hard time healing. Thanks to Fishing for Tucker, Tucker's parents were able to care for him and help him to heal without having to worry about the cost of the necessary surgeries. He has a very long road ahead of him, but these successes are showing us that this is the right track for Tucker to be on.