Incurable mitochondrial disease burdens Staten Island five-year-old

Instead of the structure of summer camp, five-year-old Anthony Capece’s day is organized around doses of medicine, feeding tubes and the fear of seizures.

A seizure episode after playing outside last year led to Anthony’s diagnosis with a rare, incurable genetic disorder called mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS), and the loss of his chance at a normal childhood before it even really began.

The Staten Island boy’s condition is a form of mitochondrial disease, affecting the part of the cell that produces energy. The rare disease has made daily tasks difficult for Anthony and left his family with thousands of dollars in medical expenses.

Jodi Macaluso, Anthony’s godmother, launched a Go Fund Me fundraiser last month to raise money to help pay for the growing cost of caring for him.

“Anthony wants to be a typical boy his age but he has always had struggles through the years with language, muscle tone and his lack of energy,” said his mother, Danielle Capece on the family’s Go Fund Me page. “Always searching for answers, I knew there was a missing link. This rare metabolic disease is robbing Anthony of the energy his body needs to function. The Powerhouse of Anthony’s daily life has been affected. Simple everyday tasks such as playing, eating, digesting, walking, running, drawing or even writing are difficult activities for him.”

According to the Go Fund Me page, Capece needs several expensive treatments. He is currently fed through a GI feeding tube to ensure he gets the necessary calorie count and nutrition. The supplies for this cost $450 a month. Specialists have also placed him on a research-based vitamin cocktail and Arginine that are supposed to help with his seizures and slow the progression of the disease but cost $700 a month and are not covered by insurance. In addition, regular medical care under the specialists Capece needs often aren’t covered by insurance.

The boy’s father Anthony Capece said the family is in the process of filing for Medicaid in hopes of getting more hands-on service and a wider range of coverage, but the process is long. Under his current insurance, it can take months to get approval for the things Anthony needs, whether it be medications or a walking apparatus.

But Capece said Anthony’s future is unclear and he wants to make things as comfortable as possible for him; so if that means buying a walking apparatus out-of-pocket to allow his son to walk to his Legos on his own, he will buy it. But paying out-of-pocket for medical items instead of waiting puts even more economic strain on the family.

“I want to get it for him now because I don’t know what his condition is going to be in six months,” said Capece. “I’d rather give him the mobility and the ability now than wait for somebody sitting behind a desk to approve it.”

The cost and difficulty of getting the care Anthony needs only add to the concerns Capece has about his son’s condition.

“It’s torture… it’s like you’re running a race that never has an end. There’s no rest, there’s no peace. Even when you’re at work, you’re constantly worrying about your child,” he said.

The money raised via the Go Fund Me page will allow Capece and his wife to worry less, pay for the things Anthony needs without a wait, get him the in-home care he needs, and allow the couple to spend more time with their son with their minds a little bit clearer, he said.

“It makes you appreciate the smaller things in life. When I am with him. I am really with him. I’m not on the phone. I’m not working. I’m not distracted by Facebook or Twitter or any of that. I’m with my son…. He’s taught me to appreciate life,” said Capece.  “My wife and I want to spend more time with Anthony and less time managing the care he needs.”

In the past months, the flu, pneumonia and some worsening seizures and difficulty with mobility have made good days more rare for Anthony and his family, but he hasn’t lost his childhood innocence.

“He does smile. He does laugh… he loves his iPad. He’s just a pleasant, sweet, gentle kid,” said his father. “Unfortunately, he has a battle on his hand.”

At the date of publication, the family has raised $114,797 of their $1M goal. Donations can be made on gofundme.com