Jackson's Story

Jack was diagnosed with mitochondrial disease called Leigh's when he was 7 months old. Mitochondrial disease is the body's inability to turn food into energy. We spent a week in the hospital enduring a CAT scan, MRI, heart tests, EEG, kidney ultrasound, feeding and lung evaluation, and a genetics consultation. Eventually the doctor came to Jack's beside and delivered the diagnosis. We were totally and completely devastated by this terminal diagnosis of Leigh's. Leigh's disease specifically effects brain cells. When brain cells can't make the energy they need to survive, they die. Jack has brain damage in several parts of his brain which is why he has daily seizures. He is gtube fed because he can not swallow. He has a daily respiratory hygiene routine to keep him from getting pneumonia. Jack had muscle weakness all ovet hos body and can not sit up independently. He uses a wheelchair and a handicap accessible van to get him places. Jack can not fight off common illnesses caused by viruses or bacteria because he does not have the energy. Even with antibiotics and modern medicine interventions colds and germs are very dangerous to kids with weak immune systems. Jack is completely dependent on adults for all his daily needs. Jack can not speak and uses a computer to communicate. He is a wonderful little boy that loves to watch movies, listen to music and have books read to him. He also loves his pets! We are thankful for his life and the lessons we have learned along our mito journey!