My family’s life changed forever on April 10, 2020, the day my 15-year-old son, Kyler, suffered a brain bleed, and I learned a child can have a stroke just like an adult. Through an MRI, Doctors found out my son was born with a Parietal / Occipital / Thalamic brain arteriovenous malformation (AVM) about the size of a hen’s egg–7cm x 5.5 cm. A Brain AVM is a tangle of abnormal blood vessels, that look like tangled yarn, where high flowing blood from arteries are connected directly to low flowing blood from veins, without the very important capillary system in-between. Arteries are never meant to connect directly to veins. After a while, the wear-and-tear-stretch of this abnormal direct link injures the blood vessel, and it may break. A brain AVM is like a hidden ticking time-bomb no one knows exists, because often there are no prior symptoms, until it bleeds. Not every AVM bleeds, but this is what happened to Kyler. His AVM ruptured spilling blood into the surrounding brain tissue causing a hemorrhagic stroke. In some cases, AVMs can be hereditary; but in most cases, like Kyler’s, they are a random occurrence you are born with.

When I was little, there were “Choose Your Own Adventure,” books and you could make a decision and turn to page “X,” and if that didn’t work out the way you wanted it to, you could go back, pick a different choice, and turn to page “Y.” But pediatric brain vessel disease is real life. When you deal with the brain, and make a decision, what’s done is done. You can never go back. The doctors can give you statistics, but when a brain doctor says there is “X” percent chance something bad will happen, you must be okay with that thing actually happening. One of the hardest parts for families, whose child is diagnosed with brain vessel disease, is making these medical decisions that will impact their child’s life forever. This is especially the case when multiple doctors –all highly qualified experts in the field — have vastly different opinions on what the correct course of action is.

My husband and I were told if we attempted treatment on Kyler, he would become an epileptic which is exactly what occurred. Epilepsy is a consequence Kyler will now have to live with because of a decision we made. It was one of many high-stress required choices. Many parents whose child has suffered a stroke, myself included, have been diagnosed with post-traumatic stress disorder, or PTSD. The stress and amount of suffering parents go through in determining what to do for their child is like riding a rollercoaster but there is no getting off the ride. Once you are on, you are forced to STAY. With a traditional coaster, the rider can scream with every fiber of their being, and no one around gives a second thought to mental state. Parents whose child is dealing with a stroke or brain vessel disease do not have this luxury, so their screams often stay silent.

Silent Screams are intense, emotional and mental distress moments felt by an individual but not vocalized outwardly. They are the result of the very real stress of having to make permanent, life altering, decisions about your child’s health and future. The weight of medical challenges (even if the AVM itself is removed) is almost palpable. A child’s daily struggle, clear anxiety, and confusion or “groundhog days” complete with the same questions that were answered just moments ago, further complicate a parent’s sanity. There is no way to know if the choices you are making for your child are the right ones. Our family created the non-profit, AVM Alliance Inc., to help parents navigate this world of pediatric stroke and brain vessel disease. We clearly hear the silent screams, and our goal is to help by providing a community that understands.

With Kyler’s diagnosis, I learned the true meaning of “When it rains, look for rainbows, and when it is dark, look for stars.” If you choose not to take a path with this mentality, you are far more likely to travel down a very dark road. When someone is going through real suffering, they have to find their “Why”– and find the “treasure,” the meaning, in all they are going through. The treasure is the light when you are in a very dark place emotionally. When Kyler left the hospital the first time, we were told there was a 99% chance he would have another bleed and over 50% chance it would be fatal. AVM Alliance was our “Why.” My husband and I would do our research, and make those hard decisions, but ultimately, we could not control what happened to our son. After Kyler’s treatment plan was decided, we chose to focus on what we could do, which was to make things better for other children dealing with traumatic brain injury, brain vessel disease and stroke.

My background is in sales as real estate agent with over 22 years of experience, 1,800 closed transactions and more than 650 verified 5-star reviews. As a person with a solutions-driven personality, I constantly think outside of the box. A podcast was needed, so I taught myself how to produce one. When editing audio and video became required to tell the story of pediatric stroke, those things were added to the “must learn” list. As a Realtor, I had never attended a support group or even thought about a non-profit, so a lot of research and planning was required before making it happen. Learning even the basic information on brain vessel disease required hours of reading published medical data with Google open because many of the words used were not ones I understood. With no medical background, but highly motivated by our son’s diagnosis, I wanted to know the personal experience, education, and background, of each doctor we spoke with. The rational behind the recommendation on how to treat my son was equally as important to me as the advice. Often, I asked myself “why, did this happen to us?” The conclusion I came to is families who are dealing with pediatric stroke must need a salesperson. They need an advocate who can understand the big problem, the different treatment options, and can tell the story of pediatric stroke and brain vessel disease in a way that results in a better future for children.

I created the Facebook page “AVM Alliance: A Pediatric Stroke Page” to tell the public story of other survivors (as well as of those who do not survive) and provide information while also showing why there is a need for awareness, research, and a cure. I formed a private Facebook group for parents whose child is dealing with Traumatic Brain Injury, brain vessel disease, and stroke because of the need for community in this situation. When I realized more information need to be broadcast, I started a monthly podcast. Finally, On April 10th, 2023, three years after Kyler’s hemorrhagic stroke, AVM Alliance became a recognized 501(c)3 non-profit and in June our support group for mothers (whose child is dealing with brain vessel disease or stroke and those whose child has gained their wings as a result) held its first monthly zoom meeting. To strengthen this community, I started 2 private group chats–one called “In Heaven” and one called “On Earth.” By July, the informational website www.avmalliance.org was officially live.


Some of the AVM Alliance “In Heaven” parents have a child who did not gain their wings from their brain bleed but from knowing what it was like NOT to have a disability and not be able to deal with the change. Some of our “On Earth” parents are told by their child they wish the brain bleed had just taken them because they see their (no longer) friends and they try to use their (no longer working) body, and they know their old life is never going to come back—no matter what therapies they do. For most families, it is trial by fire with no clear answer on how to solve our child’s significant problems. This is how, and why, behind the mission of AVM Alliance.


OUR MISSION is to educate the public about pediatric stroke, show children who have brain vessel disease they are not alone giving them hope and encouragement, provide valuable support and information to help families on their journey, raise awareness, and fund research for early diagnosis, treatment and a cure for brain vessel disease.

 

WHAT WE OFFER:

  • One-on-One Parent Support Network connecting parents of children affected by this disease.
  • Private Parent Community Group where families can be open, ask questions, share feelings, and learn from the experience of others.
  • Platform to Raise Awareness on social media by spreading community awareness and featuring stories of children diagnosed with brain vessel disease and those who have suffered a stroke.
  • MonthlyPediatricStrokePodcast — www.avmalliancepodcast.com
  • Monthly Support Group connecting parents internationally that meets over Zoom.
  • An Informative Website — www.avmalliance.org (https://www.avmalliance.org/)
  • Hospital Handouts & PDF Material with information on pediatric stroke and brain vessel disease for doctors to easily download and distribute.
  • Collaborations with doctors, hospitals, and stroke organizations to provide information and education through Patient YouTube informational webinars, videos, and podcasts throughout the United States.
  • Advocacy through letters, meetings, and formal proclamations to bring the condition of childhood stroke and brain vessel disease to those who have the opportunity to make a real difference in the lives of children and their families.
  • Community Connections: We work with other organizations, including The Aneurysm & AVM Foundation, The Joe Niekro Foundation and the clinician-run “International Pediatric Stroke Organization” (IPSO).
  • Mail Out Campaigns sending gifts of support and encouragement to children who have suffered a stroke and to those diagnosed with brain vessel disease & their siblings, sending encouragement to those in recovery, and grief boxes to families whose children have gained their wings.

 

CURRENT MAIL OUT PROJECTS:

  • Butterfly Hugs at the Hospital: Hospital gift packages
  • Cocooned in Care, Wings Of Compassion: grief package for parents & siblings whose stroke warrior has gained their wings
  • Piggy’s Bookshelf: Books for Brave Ones: Sending books to children in therapy and those who are just having a hard time with this disease about strength and courage
  • Piggy’s Wings of Hope Mail: packages sent while a child is in therapy or about to have another medical procedure
  • Certificates of Bravery

We are a 100% volunteer organization, and all funds raised go to our mission to help these children and their family. www.avmawareness.org

 

Contact Info:

About the Author

Raylene Lewis

Raylene Lewis

Executive Director of AVM Alliance

Raylene Lewis is passionate about increasing pediatric stroke awareness. She created AVM Alliance, serves as its executive director, and has a podcast titled “AVM Alliance: a Pediatric Stroke Podcast”. Raylene Lewis has also been a real estate agent for more than 20 years, during which she has sold upwards of 1,500 houses.

Graphics: Karen Glenn

Junior Editor: Laila Alkhouri