Rare Diseases

Update: 5-year-old New Dorp boy with rare disease fights for life

STATEN ISLAND, N.Y. — Anthony Capece, Jr., doesn’t like doctors anymore “because they hurt” him, but the brown-haired, bespectacled little boy still loves his books and playing with Legos.

“But he gets frustrated, understandably,” said his worried grandpa, Anthony Lorenzo. “We try to play chess but he shuts down.”

To backtrack a bit: In May, we reported on a 5-year-old New Dorp boy fighting for his life. The son of Anthony and Danielle Capece suffers from the rare disease MELAS (or Mitochondrial Encephalopathy, Lactic acidosis, and Stroke-like episodes), a genetic disorder which results in seizures, strokes and dementia.

Fast forward three months: It’s August. A time when other little boys and girls are enjoying whatever remains of carefree summer vacations.

But Anthony’s condition has progressed.

“He recently had an MRI that showed a lot of metabolic strokes and they are now considering him to have Leigh’s syndrome, which is still mitochondrial disease and considered MELAS,” said his dad, Anthony Capece, Sr. “However, Anthony’s brain stem has now become affected. We are still battling through the Medicaid process with little or no progress. He really needs nursing to monitor him closer than my wife or I could.”

A VICIOUS CYCLE OF SURVIVAL

Anthony’s young life has been a struggle because of chronic weakness and lack of coordination involved with everyday routines. He is unable to jump, run and go up and down the stairs.

Battling MELAS requires maintaining a certain amount of calories per day for Anthony; it’s also important that his body does not become stressed, which causes seizures. At the time of our last story, Anthony was hospitalized with uncontrollable seizures. He also underwent surgery to receive to a GI feeding tube.

Although there is no medicine for this disease, specialists placed him on a non- insured, research-based vitamin cocktail and Arginine that costs $700 a month. In addition,…