A Chesterfield teen with a rare, life threatening, disfiguring disease is no longer hiding in silence. The 14-year-old believes his life's purpose is to let others know, you are not alone, no matter what you're going through.
The St. Christopher's honor roll student has never shared anything about why he looks the way he does, until he found someone with the same disease on facebook. Ryan Longood says he wants 12 to help him raise awareness about Arteriovenus Malformation or A.V.M.
Ryan Longood and his mom laugh playing a board game, but life will turn serious when school lets out in June. Ryan's summer vacation will start with another surgery to reshape his face.
"There's too much pressure on Ryan's eye. In order to do that, they have to go through here and shave that bone down to allow his eye to fall back and sit the way the other eye does," said Ryan's mother, Monica Logwood.
"It's always the fear that comes with the surgery that something could go wrong. It might get complicated. Anything could happen. So, I have mixed feelings," Ryan said.
A.V.M.'s are snarled tangles of arteries and veins that grow and bleed and cause disfigurement and life threatening complications.
"It was so heavy for him. Little things," Monica added.
The difference between the two pictures is 10 years and 40 surgeries. Ryan also had numerous misdiagnoses. Doctors removed his palate and a protruding mass from his mouth, early on. But, emotional and psychological scarring silenced Ryan socially, until he found Jasmine Gray online.
Jaz turned her pain into a passion and is creating a documentary to eliminate fear for people who distance themselves. She inspired him to speak out.
"It's kind of like being in a dark hole no one knows about you. Then somebody suddenly realizes, oh, he's a person. You can talk to him. He's normal like us," Ryan said. "I am grateful for what she's done. What she's done in my life."
Ryan started a school fundraiser to help with filming expenses. In turn, St. Christopher's invited Jaz to speak to the entire middle school.
"I want to raise awareness and let people know that it's what's on the inside that counts," said Ryan.
"In this age of bullying and picking on kids that look a little different, it's a powerful message that needs to be told to kids not just about AVM's," Monica added.
The school raised $500. If you'd like to donate, watch the movie trailer, or learn more click here. AVM's are so rare; Ryan's doctors are in Arkansas. There are 17 cases for every 100,000 people. The Longoods say their belief in God gets them through.
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