AVM Alliance

Follow Us on Social Media and SEE Your Impact!

Hope on the Horizon: We need your help to making life-changing differences for children who have suffered a stroke or been diagnosed with brain vessel disease. Your support empowers hope and healing through AVM Alliance.

Our Mission is to educate the public about pediatric stroke, show children who have brain vessel disease that they are not alone, provide valuable support and information to help families on their journey, raise awareness about this condition, and fund research for early diagnosis, treatment and a cure for brain vessel disease.

KYLER'S STORY:

On April 10, 2020, Kyler Lewis, was riding in the car with his mom when he suddenly became very confused. He told his mom he didn't know where he was or how he got in the car and all of a sudden his head hurt very, very badly and his vision was blurry. He couldn't remember anything for more than a few seconds. Scared of COVID-19 at the time, his mom rushed him to the pediatrician who was near by. The pediatrician diagnosed Kyler with an acute migraine headache, gave him a shot, and told his mom she should take him home and put him to bed. Instead, his mom left the doctor's office and drove her son to Texas Children's Hospital for a 2nd opinion. By the time they arrived almost 2 hours had passed and Kyler was in what they medically called a "severely altered mental state." His mom kept insisting to the ER Staff he was NOT a 15 year old teen on drugs; he was not that kind of kid. There was something very, very wrong with her son! Unfortunately, the medical staff thinking Kyler was on drugs, and asking him to pee in a cup, is actually a common problem for victims of stroke who are trying to get help at the hospital. This must also change because with a stroke, time means everything.

A brain CT scan revealed Kyler was having a stroke. He was bleeding in his brain and required emergency surgery. He was diagnosed with an "Acute Spontaneous Intracranial Hemorrhage" aka a hemorrhagic stroke. His family never knew this was a thing--that kids can have a stroke just like an adult can. But IT IS something parents should know exists and should be aware of the symptoms to look out for. Kids can have a stroke too, but most doctors don't think "possible Stroke" along with "pediatric patient" and this is something that needs to change. Brain AVM's are rarely diagnosed until a bleed occurs-and many times, when that happens, the results are life changing if not fatal.

Kyler's family always thought Kyler was perfectly normal and healthy. He passed every yearly wellness exam with flying colors, was always signed off on by doctors to participate as he wished in sports; he had never even had a headache a day in his life. The night of April 10th, however, they discovered Kyler was born with an Arteriovenous Malformation (Brain AVM) and it had ruptured. An MRI later revealed Kyler's AVM is inoperable; A "Spetzler-Martin grade 4 to 5" in the Parietal/Occipital lobe of his brain, about the size of a chicken's egg. Brain AVM's are graded from 1-6. They are called "Ticking Time Bombs" by the medical community because they can rupture at anytime until they are removed.

Since starting this journey, Kyler's family have met many other parents walking this same journey. This is why AVM Alliance was created. They are trying to make a difference for these kids. These children need help and the public needs to be informed that stroke has no age limit. That is what AVM Alliance is trying to do.