On November 13th, 2008, we celebrated the birth of our only child, Thomas Zhou Percy. With the birth of our son, we began what we thought would be our journey down the path that would eventually lead to his education, adulthood, and becoming both a husband and parent. Little did we know over those first two years of his life that Thomas’ path would lead us in a different direction.
During his first two years, Thomas was the typical little boy. He laughed and played, crawled and walked, spoke his first words, learned to use the toilet at an early age, and loved to listen to music. Sure, there was crying and sleeplessness and some vomiting after meals, but that was all just part of infancy, or so we thought.
Just before his second birthday, Thomas experienced as sudden and unexpected asthma episode as a result of a viral infection. He was rushed to the hospital and spent a few days in the ICU. When we were finally discharged, we went home with a nebulizer machine and became educated on how to handle any future asthma attacks. We didn’t think much of it because many people suffer from asthma which can be effectively controlled with the proper medication.
Over the next two months, we began to notice a decline in Thomas’ motor skills. At first, he had difficulty using his right hand and arm. Later, he began to have difficulty standing up straight, until he eventually had difficulty walking. We began immediate physical therapy in the hopes that this could be corrected before it became worse. It was around then that he began to experience tremors in his arms when he tried to move them.
In early 2011, it was apparent he wasn’t getting better. After a series of phone calls place by his primary care physician, Thomas was evaluated by a neurologist and admitted that evening for an MRI. The results of the imaging showed that there was damage to the basal ganglia region of his brain, the part that controls motor skills and muscle movements. The image also showed elevated levels of lactic acid, a sign we were told of a likely mitochondrial disorder, something that most people don’t even know exists. Until we knew for certain, we focused on helping to prevent Thomas’ motor skills from declining further through continued physical therapy and the addition of nutritional supplements that had shown effectiveness in boosting the performance of his mitochondria.
Over the next few months, Thomas endured a number of medical tests that ultimately diagnosed his disorder as Leigh’s Syndrome, a progressive mitochondrial disease that slowly destroys the tissue of the brain, ultimately resulting in death, often from heart or respiratory failure. It is often triggered by a viral infection that overwhelms the ability of the mitochondria to support the cells of the brain. The cells die as a result. That asthma attack a few months prior was the trigger. As parents, we read about Leigh’s Syndrome only once, because it was too devastating a prognosis to face. Death often occurs early, and usually before a child reaches their teens. We feared for our son.
Thomas didn’t show fear…he was a fighter. Brave when enduring another hospitalization or test (there were many), tenacious when battling through the regular sessions of physical therapy, confident in his abilities to battle back after further deterioration in muscle strength, and courageous in the final days of his life as he lost the ability to breath on his own. He was a hero to all who knew him. Because of these traits, Thomas fought a long battle and lived until he was eight and a half. He died on May 30, 2017 in our arms.
Throughout Thomas’ journey, we experienced numerous joys, and witnessed his perseverance in the face of tremendous odds. We watched as he eagerly struggled to learn how to write on his own, or how he learned to squeeze his wheel-chair through the smallest of paths in our home, or how he seemed to have this special aura that attracted various animals to his side. How he loved the outdoors and found a way to help with the gardening, and loved to go to the pool to be tossed in the air for a mini-cannonball. How he would spend hours creating robots or other objects from his imagination using his Duplo blocks. How he loved to go shopping, showing great taste for clothes, plants and anything else he helped pick out. How he loved to binge watch the Power Rangers or Voltron, making sure to finish an entire season before switching to another show. Or how he could find the strength and stamina to sit and paint birdhouses and outdoor scenes with his physical limitations. And most amazingly, Thomas remained a funny, thoughtful, kind, compassionate and loving little boy until his last days. These were our son’s Golden Years.
How to Help
Thomas waged a long battle against mitochondrial disease for eight wonderful years. Despite all of the advances in technology, treatments for mitochondrial disease are mostly ineffective — there is no cure and the prognosis is poor. According to the United Mitochondrial Disease Foundation (UMDF), exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed. Other sources estimate that only 2.5 in 1,000,000 people suffer from the same Leigh’s Syndrome that Thomas was born with.
With your help, we can drive change. We’re asking you, our friends, family & Thomas’ biggest supporters, to donate to the Thomas Percy Family Fund. All donations will go directly towards supporting mitochondrial disease research.
Thomas’ journey did not end after eight and a half years. His journey continues as we work together to spread his story far and wide, driving understanding and awareness of mitochondrial disease and hopefully, one day, a cure.