Antonio Aguillon was already worried when doctors diagnosed his 2-year-old son Leo with pneumonia. But then an X-ray revealed the unthinkable — half of the bones in his chest were missing. Turns out Leo suffers from an extremely rare illness — Vanishing Bone Disease. And he needs prayer!
Little Leo was your typical 2-year-old. Full of life and all over the place!
“He was jumping and running and playing,” says dad Antonio Aguillon.
But then the boy, who lives in Michigan, came down with a cough. So, Antonio took Leo to the doctor.
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Doctors discovered the boy’s cough was actually pneumonia. But then a routine chest X-ray revealed things were even more serious.
2-Year-Old Boy Diagnosed With Vanishing Bone Disease
Credit: GoFundMe
Staring at the scan, something wasn’t quite right. Many of the bones that should have been present in the little boy’s chest simply weren’t there.
"It was extremely scary, we freaked out. We didn’t know what to think,” Antonio said. “Basically the bones are not there on the scan.”
Leo’s entire left rib cage and sternum are missing because of an extremely rare and bizarre medical problem called Gorham Stout Disease (also called Vanishing Bone Disease).
“It's definitely rare,” said medical geneticist Dr. Caleb Bupp. “It's hard to pinpoint a number because it's had so many names over the years, and it's been something that we didn't know what it was, but I think a ballpark around 300 is about what's been reported.”
Dr. Bupp goes on to explain that the disease is completely sporadic. Nothing, in particular, seems to cause it or stop it. They believe it affects the lymphatic vessels inside the bones. For reasons unknown, these vessels get overly active, causing the bones to dissolve and then absorb into the body.
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Sadly, there’s no cure for the disease, only treatments for the symptoms. Doctors sedated Leo so his body could fight his pneumonia, and as it turns out, the flu, as well.
“It’s the hardest thing I’ve ever seen or been through,” Antonio Aguillon said. “We have hope… we are confident that he is going to overcome pneumonia and cope with the disease that he has.”
Prayer And Support For Boy With Vanishing Bone Disease
As Antonio prepares for Leo’s extended hospital stay, he and his family have been flooded with support. Friends and colleagues from Grand Rapids Community College, where Antonio works, are doing their best through a GoFundMe page to make sure medical bills are the last thing he has to worry about during this time.
“It’s extremely humbling,” Antonio said. “I’m impressed and overwhelmed by the generosity of the community; my friends, my coworkers, the GRCC family, which is where I work.”
Prayers are needed as the 2-year-old’s family and doctors figure out what to do next. At some point, they may transfer the boy to Boston Children’s Hospital, which specializes in lymphatic disorders. But for now, Leo will stay at the hospital in Michigan where his current doctors will consult with specialists from Boston Children’s Hospital.
Leo’s parents are by his side each day, talking to him and reading to him. And while the future is uncertain, Antonio says they’re remaining hopeful.
“You don't really know how resilient you are until you are faced with a situation like this,” he said. “I would like to think that we are, we're optimistic though, we are definitely optimistic and we know Leo is an extremely strong little guy, he's a fighter.”
WATCH: 2-Year-Old Boy With Vanishing Bone Disease
Please keep this precious boy in your prayers. We know God can do amazing things!
“You don't really know how resilient you are until you are faced with a situation like this,” Antonio said. “I would like to think that we are, we're optimistic though, we are definitely optimistic and we know Leo is an extremely strong little guy, he's a fighter.” 1 Timothy 4:10
h/t: FOX 17 West Michigan
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