Ten year old boys love to hang out with friends, play sports and just be goofy. Anthony Birrittieri is no different. But, in the midst of leading a normal 10 year old life, he also has to undergo extensive tests and MRIs every six months due to a genetic disorder that can have life-threatening results.

“When he was five we had him tested because his skin’s really dark,” said Anthony’s mother, Michele. “It’s called hyper pigmentation. It comes from something called Addison’s disease and once we found out he had it, the doctors wanted to find out why he had it. Basically, his adrenal glands don’t function; they don’t produce the stress hormone cortisol. That’s the Addison’s part of it. But the biggest part of it is he has a leukodystrophy. It’s called Adrenoleukodystrophy (ALD).”

Anthony must take precaution when being active, especially when playing baseball. He must take cortisol everyday sothat he can give his body what it doesn’t make on its own. He also has to stay very hydrated, as his body can dehydrate very quickly. To combat this, he is constantly drinking Pedialyte to increase his electrolytes.

Although the disease is asymptomatic right now, there is potential for it to manifest itself at any point. This causes them to get MRIs every six months so they can monitor the myelin sheath that protects the brain and the spinal cord. This would begin to deteriorate should the disease choose to become active. But for now, his mom said “everything’s clear”.

“We just pray to God that everything stays that way until he grows into adulthood,” said Michele. “The disease can manifest itself in young adulthood but it’s not as severe as in childhood. Once he hits the age of 13 we’ll be coasting, hopefully.”

Although the disease can affect him cognitively, Anthony remains an honor roll student.

“That’s usually when you see it,” said Vincent. “Sometimes the parents may see where the kid’s grades aren’t doing well or things with their eyesight.”

“They can have a regression cognitively,” added Michele. “Sometimes they get misdiagnosed as ADHD because they’re losing focus and what’s really happening is they’re developing lesions on their brain. Some parents find out too late. Once it’s too far gone there’s nothing you can do.”

Anthony’s younger brother, Joey, also suffers from the disease.

“It’s passed on by the woman,” said Michele. “It’s an X linked genetic disorder so they get their X chromosome from mom. I had no idea; there was no family history. It can take their lives before the age of 10, 12, 13. So that’s what we deal with on a daily basis.”

Anthony, like any young boy, looks up to his father in many ways. For one, he wears #24 on the field because that’s what his father wore in baseball. But, Vincent looks up to his son just as much, if not more.

“He worries about losing his brother, Joey, from this disease more thanhimself and I think that most of all makes him a strong and amazing kid who I believe is a hero in his actions on and off the field,” said Vincent. “We pray for a cure and pray for strength every day.”

Anthony wants anyone suffering from the same disease or something similar to remember to “keep the faith” and “keep fighting”. We know he will.

Anthony played for the Parkland Pokers in the 10U Division at the 2015 AAU Baseball Grand Nationals and lit the torch at the Opening Ceremonies. A boy who seems to play every position and play it well, he looks forward to trying to play professionally when he gets older. And we look forward to watching him.