Kelly and Joe Handy were blessed to welcome their beautiful son, Holden, to the world on July 5, 2016. From birth, Holden had difficulty eating and would take hours to finish a bottle. Within the first few months of life, Holden did not meet any milestones and was diagnosed as failure to thrive. After being referred to a neurology specialist and undergoing a MRI, Holden was diagnosed with Leigh syndrome on November 1, 2016. Kelly and Joe were told not to expect him to see his second birthday.

Seizures and hospitalizations soon followed. A g-button for feeding, many medications, and specialized equipment weren’t far behind. Genetic testing to confirm the diagnosis (mitochondrial DNA mutation in m.9185T>C) led to the discovery that Holden’s older sister, Kyla, suffered from the same genetic mutation. The Handy family’s lives were turned completely upside down.  

In the nearly four years since Holden’s diagnosis, they have become accustomed to riding the roller coaster that is this disease. There have been many wonderful memories and milestones, along with many periods of illness and regression. Holden has been hospitalized several times, the longest stint being 17 days. He has been enrolled in and subsequently discharged from a pediatric hospice program on three separate occasions. After a recent hospitalization in June, he is currently on his fourth hospice enrollment. However, with each challenge that he is faced with, Holden always seems to bounce back like a true warrior.

Holden is currently on at least 15 different medications to control the many symptoms of Leigh syndrome, which include seizures, secretions, and gastrointestinal issues. He is fed via g-button and sleeps with the aid of a ventilator for BiPAP due to his severe sleep apnea. He receives subcutaneous immunoglobulin therapy to boost his immune system, which has been a true lifesaver for him. He sees no less than 10 different specialists and receives physical, occupational, and speech therapy.

Kelly says “Holden loves being in the water, dancing, and watching Mickey Mouse and Toy Story on TV, but more than anything, he loves Kyla. He is our hero and a source of light on our darkest days. We are blessed that we were chosen to be his parents and we are thankful for every beautiful moment that we have with him.”

Holden has already more than doubled his initial life expectancy. He has been through so much and has overcome so many obstacles in his young life, and he has done it all with a giant smile on his face.  

Please help Holden and others like him who face Leigh syndrome with no cure in sight. Donations will fund research to uncover better treatments and ultimately a cure.