By 2019, the Walker family was well acquainted with the Alberta Children’s Hospital. Both Aliyah and her younger sister Madelyn were diagnosed with Cystinosis, a buildup of cystine crystals. For years their conditions were managed with medications and observation and both girls were healthy and vibrant.
Everything changed one afternoon at the top of Grassi Lakes. Madelyn started speaking strangely, like she had a mouthful of marbles, and her left hand was limp. The family scrambled down the mountain ready to take her to the hospital, but her symptoms disappeared, she seemed herself again. Five days later the symptoms came back and the family rushed her to an urgent care clinic. From there Madelyn was taken to the Alberta Children’s Hospital where the family received troubling news: Madelyn had moyamoya, a rare and progressive blood vessel disease that restricts flow in the brain. She was experiencing transient ischaemic attacks or TIAs, which are mini strokes. If left untreated, moyamoya would eventually cause strokes. She needed a surgery that would attach an artery to her brain to allow for better blood flow – two surgeries, one for each hemisphere. Surgeries come with their risk but her condition was worsening, and something needed to be done.
In quick succession Madelyn experienced numerous TIAs, and then strokes, while waiting for the surgery date. Finally came the surgery in October when she waved goodbye to her family from the bed, eager to wake up and eat a bowl of Rice Krispies. Her parents would instead be delivered devastating news: Their little girl had suffered a stroke in surgery, and she had lost her entire left side. She couldn’t speak, and in fact she was still at risk of strokes on the other side of her brain. While recovering from her first surgery and while just re-learning how to walk, sing and play, she suffered a fifth stroke. “It stole her speech, her laughter, her right arm, and her awareness,” says mom.
In January of 2020, Aliyah was also diagnosed with moyamoya. Her parents were terrified, however Aliyah’s surgery went smoothly and by summer she was riding bikes and horses and living as if she’d never had brain surgery. She is awaiting her second surgery as is Madelyn, who is again re-learning to walk. She is in school and receives therapy from a team of caregivers who are dedicated to maximizing the possibilities.
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