Moyamoya Awareness Day – May 6

Moyamoya disease is a rare blood vessel disorder in which certain arteries in the brain become blocked or narrows. This can cause a brain bleed or stroke, and the damaging effects of strokes can include seizures, paralysis and vision problems. Moyamoya may occur at any age but most commonly affects children.

Grandview Kids Client Story:

Three-year-old Xander was only 10 months old when he had a seizure, which turned out to be a stroke. While having an MRI done in-hospital, they discovered a blood clot and a stroke actively occurring. His MRI findings showed that his vessels had “disappeared,” and he was diagnosed with Moyamoya, which in Japanese means a “puff of smoke.” Xander underwent bilateral brain surgery to help with blood flow and better the success of stroke prevention. Unfortunately, soon after the surgery, he ended up having another stroke requiring time spent at Holland Bloorview Kids Rehabilitation Hospital to help regain his left-side strength.

The strokes that Xander suffered from affect his daily living as they have caused severe and long-lasting damage to his motor control. His left-hand does not function properly, so he struggles to carry things and almost forgets the left hand exists. He had a brace for his left hand as well as a brace for his leg which had also been weakened by the strokes. Xander has chromosomal abnormalities and an autism spectrum diagnosis and faces Ear, Nose and Throat (ENT) and digestive challenges. Xander is part of Grandview Kids’ Complex Care Clinic, a multi-partnered program that brings local complex care planning to deliver continuity of care coordination to children with complex medical needs. Through Grandview Kids, he also receives physiotherapy, speech-language pathology occupational and recreational therapy.

As a child with complex medical needs due to a rare disease, his parents find themselves on a difficult and foreign path. There remains a lack of information on Moyamoya disease so Xander’s parents are provided with limited insight as to what his future may look like. Being able to manage work, safe childcare, personal relationships, and numerous weekly appointments is challenging. His parents’ biggest hardship currently is being able to find someone to watch Xander who is comfortable in supporting him with all his complex medical needs. Though he continues to improve, and his speech is returning, his parents face the unpredictability of this progressive disease. It can be exhausting having to deal with strangers who are ignorant and treat him differently or professionals who question parental intuition, but Xander’s mom, Laura, will continue to fight for her child. “You know your child the best, so if you think something is wrong, keep advocating for them.”