By Meghan Holohan -
TODAY
In 2013, Ryan Logan, then 11 years old, began experiencing headaches and vision problems two or three times a day.
One day his head hurt so much that he didn't get out of bed until very late, something very unusual for him.
His parents, Sherri and Mark Logan, took him to an ophthalmologist and a neurologist to determine what was wrong.
They discovered that he had a cerebral arteriovenous malformation (AVM).
“It's very rare,” Mark Logan, 52, of Houston, told TODAY.com.
“The scary thing about AVM is that many times it doesn't present any symptoms, and it's basically like having a time bomb in your brain that can go off at any moment.”
When the Logans asked the doctors what the treatment was,
they were told to just forget about it
because the surgery was going to be long, difficult and potentially harmful to the teen.
“They told me, 'Go ahead, live your life.
We can not do anything.
It's too risky,'” Sherri Logan, 52, told TODAY.com.
“So, sure enough, she suffered a brain hemorrhage.”
Ryan Logan liked sports and being active.
His parents didn't know he had a life-threatening brain malformation until he started experiencing headaches and vision problems.Courtesy Logan family
Ryan Logan liked sports and being active.
His parents did not know that he had a potentially fatal brain malformation until he began to suffer headaches and vision problems.
Frustrated by the lack of information and treatments for AVMs, the Logans created a foundation to support research into this disease in the hopes that others would not have to go through what Ryan did.
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“Nobody was doing research to find a safer treatment,” Mark Logan explained.
"I said, 'How does this investigation begin?'
[A doctor] responded: 'With people like you, it's usually an annoying mother.'
Vision problems and headaches
Ryan enjoyed an active childhood, playing soccer, basketball and golf.
He also went to advanced student classes.
“His nickname was 'Bullet,'” says Sherri Logan.
“He was very good.”
When the visual disturbances and headaches began, the Logans “knew something was wrong,” Sherri Logan recalled.
They first visited an ophthalmologist, but Ryan had perfect vision.
Mark Logan worked in medical sales and started asking some doctors what they thought.
Someone suggested migraines.
They scheduled a visit with a neurologist, who performed magnetic resonance angiography, a type of MRI that examines blood vessels, on Ryan's brain.
“They found the AVM on February 1, 2013,” Sherri Logan said.
The Logans had never heard of AVM, which is a mass of improperly formed blood vessels often found in the brain.
These blood vessels are not connected properly and may have weak walls, making them prone to bleeding.
Ryan's AVM was a grade 4 on a scale of 0 to 5, with 5 being the most severe.
“They think you're born with it,” Sherri Logan said.
“Most people don't know they have one until they bleed.”
It sounded dangerous and the Logans were surprised by the fact that
the doctors just advised them not to do anything
.
The diagnosis and lack of treatment were a hard reality for the family to face.
“It was devastating,” Sherri Logan said.
“We were like […] we have to do something, but then Ryan had a spontaneous brain hemorrhage in September 2014.”
Ryan Logan spent six weeks in the pediatric intensive care unit after hemorrhaging during surgery to remove an arteriovenous malformation from his brain. CCourtesy Logan family
Brain hemorrhages can be life-threatening and require prompt medical attention.
Although Ryan recovered without serious damage, his doctors said the AVM needed to be treated.
The Logans decided to resort to a procedure called embolization at Memorial Hermann-Texas Medical Center in Houston.
“They shoot glue into the brain around the AVM to cut off some of the blood supply, so it stops [blood] circulation during surgery to remove [the AVM],” Sherri Logan explained.
Doctors hoped to remove the AVM after that procedure, but the condition collapsed on itself.
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“Ryan suffered a massive brain hemorrhage on the operating table,” Sherri Logan explained.
“They had to remove his skull.”
Doctors also made a hole in his skull to relieve some of the pressure from the bleeding.
During the procedure, doctors were able to remove part of the AVM, but not all of it.
Some of Ryan's brain tissue was damaged, which likely
played a role in the seizures she later suffered
.
Ryan spent six weeks on a ventilator in the pediatric intensive care unit.
That's when the Logans met Dr. Roc Chen, a neurointerventional radiologist and neurosurgeon at UTHealth Houston Neurosciences.
During a talk, they asked him about AVM research and Chen explained that there was little.
But he hoped to continue studying the condition.
“He told me, 'I've been wanting to do this for a long time.
[...] But I don't have time or resources,'” Mark Logan recalled.
“[Chen] he is very confident.
It's like, 'I know what to do.
I know we can find a safer treatment and a cure.'”
The Logans were grateful to hear that someone was interested in preventing outcomes like Ryan's.
They created a nonprofit organization, the AVM Research Foundation, to raise funds to help Chen research the disease.
As they began their work together, Ryan began the recovery process.
During the procedure, doctors were only able to remove part of the AVM.
“Ryan had to relearn everything,” Mark Logan said.
“He didn't speak for six months.”
It took him a year to learn to walk again.
“He was admitted to a rehabilitation center for several months, and then we brought him home,” added Sherri Logan.
What are AVMs?
Arteriovenous malformations are abnormal growths of arteries and veins that often develop like a rubber band ball.
They are connected to each other but do not have capillaries, which means blood flows at high speed through them, according to the National Library of Medicine.
This intense blood flow can weaken them and make them prone to bursting.
“Mechanically, [AVMs] create this
turbulent, high-speed
[blood] flow ,” Chen explained to TODAY.com.
“It also creates a lot of stress on the sides of the veins.”
When this happens for years, the tension can lead to a breakup.
Although rare, AVMs are the No. 1 cause of strokes due to brain hemorrhages in children.
“It's pretty devastating,” Chen said.
Over the years, Ryan Logan has undergone four brain surgeries to treat AVM and related complications.Courtesy Logan family
Between 12 and 25% of bleeding arteriovenous malformations are fatal, TODAY.com has previously reported.
Parents often have no idea something is wrong with their child until they experience a brain hemorrhage.
Signs of brain hemorrhages include weakness, numbness, facial paralysis, sudden severe headache, nausea, vomiting, etc.
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“Everything is going well until one day suddenly there is a serious [incident],” Chen said.
“When they are born, they are normal, like any other person.”
According to the National Library of Medicine,
symptoms that may indicate an AVM
include:
Seizures.
Headache.
Vision problems.
Muscular weakness.
Movement or speech difficulties.
Fainting.
Loss of consciousness.
According to Chen, there is no real screening method for AVM and no way to predict who may be born with one.
Most of the time it is diagnosed after a hemorrhage or seizure.
Sometimes surgery or targeted radiation can remove them or make them inactive.
But surgery carries risks, such as brain injuries or bleeding, Chen said.
Researchers have discovered that a genetic mutation, which also contributes to melanoma, occurs in about 70% of AVM patients, Chen said.
With support from the Logan Foundation, Chen created a mouse with this genetic mutation, and they are trying to figure out how the signaling of the genetic mutation works to block it and potentially develop a treatment.
“Obviously, there are a lot of things about the signal that we don't understand,” he said.
“[But] it's going to be very promising.
Although the research is in its early stages, Chen is hopeful that they can develop a treatment that does not involve brain surgery or even adapt an existing therapy to treat AVMs.
The Logans' support has helped Chen advance his research.
“It's a wonderful thing,” she said.
“I am amazed by what they have offered me.”
He is grateful for how “generous and selfless” the Logans have been, he said.
They started this foundation knowing that “it might not benefit Ryan at all because his [brain] event had occurred,” Chen said.
“They told me that they really want to prevent other children [from having this happen].”
"Get something good out of this"
Now 21 years old, Ryan is still in rehab.
In total, he has undergone four brain surgeries.
His last intervention took place in 2019, when doctors removed the remaining AVM and separated the two sides of his brain to stop his seizures.
“Surgery was the only way to stop them,” Sherri Logan explained.
Ryan cannot lift the front of his foot and has paralysis in his left arm, no peripheral vision on the left side, and some problems with short-term memory and motor ability.
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Still, he has trained with a golf professional to learn how to play with one arm and enjoys working at the local golf course.
He has “a good attitude,” said his father, who is glad the foundation can help others.
“I just want to get something good out of this,” he told TODAY.com.
Ryan Logan plays golf with one arm due to paralysis in his left arm.
Courtesy Logan family
The Logans have learned a lot about fundraising over the years and continue to work on it.
They have managed to finance Chen with 1.3 million dollars.
When other parents learn that their child has an AVM, they often contact the Logans, who
offer their support
.
“Their children may still be in the hospital or on a ventilator,” Sherri Logan stated.
“It is important to have someone so you don't feel alone, especially when it comes to a diagnosis that is not so common.
There are not many people who can understand what you are talking about.”
The Logans hope that investing in studies through their foundation can help others.
“It makes me feel like I'm doing something to help someone,” Sherri Logan said.