One Disease, Many Faces – J.B. McGee’s Family Story
For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.
J.B McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.
Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.
Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.
Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.
J.B McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.