It has been over fifteen years now since we had to face a probable diagnosis of Leigh’s Syndrome for our three year old son. It started with a high fever and Roseola. Many other symptoms developed including excessive weight gain, balance issues and sleeplessness. Numerous blood test and MRI results showed something “metabolic” but no physician could give us a definitive diagnosis. We traveled from Idaho to Seattle Children’s in April 2002 with hopes of a quick diagnosis. We met Dr. Saneto that first day.
Bryson’s condition quickly deteriorated once we arrived at Children’s. The third day he was put on life support (Extracorporeal Membrane Oxygenation-ECMO). The doctors were unable to do the biopsies necessary to diagnose Leigh’s Syndrome, but Dr. Saneto recommended supplements that would eventually become part of his daily regimen. After six days on the heart and lung bypass machine (ECMO) that was keeping Bryson alive, we met with Dr. Saneto and other caregivers. They gave us no hope that Bryson would survive. Thanks to Dr. Saneto’s wisdom Bryson survived twelve days of respirators and the six day stint on ECMO. We now had the challenge of teaching him to talk, eat and walk all over again. Children’s Hospital had been our home for three months!
Without a clear diagnosis for Bryson we did Mitochondrial DNA sequencing which has shown a rare pathological complex V mutation, only documented in one other patient in the world. Since that first day of a preliminary diagnosis fifteen years ago, much has happened in the way of research about mitochondrial diseases. Still, not enough is known about this disease and its long term effect on the body, so Bryson’s prognosis is unclear.
We are so blessed to have met Dr. Saneto that day many years ago. Thanks to Children’s Hospital and its many dedicated doctors, staff and generous donors, Bryson is a happy eighteen year old boy today. We continue to be involved in the Mitochondrial Research Guild to raise awareness and to work to find a cure for this disease. Without continued research Bryson will be unable to obtain his dreams of flashing that badge as a security guard. But with continued support, there is hope that the dreams of all Mito kids can become a reality.
Sue and Brian Potter