When Sherri and Mark Logan found out that their 11-year-old son, Ryan Logan, had a rare condition that had few to no treatment options available, they couldn't wrap their minds around it. So much so that they decided to raise money for research. 2013 was the year that their now 21-year-old son learned he had a brain arteriovenous malformation after experiencing bad headaches and visual disturbances multiples times a day. According to Mayo Clinic, AVM is a tangle of blood vessels that irregularly connects arteries and veins, disrupting blood flow and oxygen circulation.
“It’s very rare,” his father, Mark, told TODAY.com. “The scary part about AVM is many times there are no symptoms whatsoever, and it’s basically like having a ticking time bomb in your brain and it could go off at any time.”
When they asked the doctors how to treat it, the answers they received provided little comfort. “They said, ‘Go ahead, live your life. There’s nothing we can do. It’s too risky,'” Sherri, his mother, shared. But then Ryan's time bomb went off when he had a brain bleed after a junior high school football game.
He refused to eat barbecue, which was a favorite of his, and then began to experience back pain, headaches, and nausea. Over the days, his symptoms worsened. His parents took him to the ER after he started vomiting, only for him to be told that he had a football injury and be given muscle relaxers. When those didn't alleviate his symptoms, Ryan's parents took him to another ER. It was only when they mentioned the AMV that doctors realized his symptoms were consistent with a brain bleed.
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Though the bleed was no longer active, the blood had collected in his spine. At this point, treatment was necessary. They decided to have a procedure called embolization done at Memorial Hermann-Texas Medical Center in Houston.
While trying to remove the AMV during the procedure, it collapsed on itself. “[Ryan] had a massive brain bleed on the operating table,” Sherri said. “They had to take his skull off.” Doctors also drilled a hole in his skull to alleviate some of the pressure from the bleeding."
Doctors were only able to remove some of Ryan's AMV and some of his brain tissue was damaged. He spent six weeks on a ventilator in the pediatrics ICU, which is when the Logans met Dr. Roc Chen, a neurointerventional radiologist and neurosurgeon at UTHealth Houston Neurosciences. During a conversation, they asked him about research on AMVs. Dr. Chen said there was very little, that he had wanted to investigate it more, but didn't have the necessary resources to. It was then that a partnership formed.
The Logans started a nonprofit called AVM Research Foundation in order to raise money to help Dr. Chen research the condition. To date, they've been able to give him $1.3 million in funding to help with his research.
“It’s such a wonderful thing. I’m stunned by what they offered to me," he said, adding that the parents started the foundation knowing that “perhaps it would not benefit Ryan at all because his event has occurred. They were telling me that they really want to avoid seeing other kids [have this happen].”
While still in the early phases of research Dr. Chen is hopeful that they can develop a treatment that doesn't involve brain surgery or at least repurpose an existing therapy to treat AVMs. Now, Ryan is 21 and making the best of his life. He's had to undergo four brain surgeries along with relearn how to walk and talk.
He is unable to lift the front part of his foot, is paralyzed in his left arm, has no peripheral vision on the left side, and has issues with short-term memory and motor planning. Despite his condition, he is continues to try to live his life, even working with a golf pro to learn how to golf with one arm. He shared, “I just want to make something good out of it."
