The story of Kyler
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. An MRI revealed 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 blood vessel cannot support the wear-and-tear-stretch this direct link causes, and it breaks. A brain AVM is like a hidden ticking time-bomb no one knows exists, because often there are no prior symptoms, until it bleeds. This is what happened to Kyler.
My husband and I were told if we attempted treatment on Kyler, he would become an epileptic which is exactly what occurred. It was one of many high-stress required choices. Many parents whose child has suffered a stroke, myself included, have been diagnosed with 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 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 palatable. 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.
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.
I created the Facebook public (awareness) page and Private (group). 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 parents (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. Our informational website www.avmalliance.org is officially live.
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 suffered a stroke and those who are dealing with 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.