Kids like Cohen win with Children’s Hospital Lottery 2022
What if you had the power to change a child’s future? Who we are and who we can become are rooted in the brain. In childhood, the brain is at peak potential for learning and development, yet also incredibly vulnerable. Illness or injury can severely alter the entire direction of a child’s life.
Cohen needed a team of specialists to save―and change―his life, after his parents noticed some twitches and unexplainable eye movements when he was just four months old.
When mom Hayley took him to the Alberta Children’s Hospital to get checked out, imaging experts performed a CT scan and discovered what her little baby was experiencing were focal seizures.
Cohen was admitted and given an IV and anti-seizure medication to stabilize him while specialists worked quickly to determine what was happening in his brain. It was when her little baby was undergoing an MRI that the gravity of the situation began to sink in for Hayley.
“One minute I had a perfectly healthy baby boy, and the next, I’m wondering, completely terrified, ‘Would he survive?’ and ‘If he did, would he develop properly?’” says Hayley. “I started to worry about his future and if he was going to have a good life.”
Fortunately, with the help of state-of-the-art imaging and DNA sequencing technologies at the Alberta Children’s Hospital, and the expertise of his world-renowned neurologist Dr. Julia Jacobs-LeVan, Cohen was quickly diagnosed with Sturge-Weber syndrome. The rare genetic disorder had caused a malformation of blood vessels in his brain and was triggering hard to detect, yet dangerous seizures.
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Work is underway to advance the hospital’s epilepsy program to offer new and better options for thousands of children, one third of whom remain unresponsive to current anti-seizure therapies.
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Cohen’s neurology and genetics teams collaborated to develop the best treatment plan for him before the seizures could cause irreparable brain damage. Thankfully, Cohen’s seizures were controlled with medication and the team keeps a close eye on him as he grows to ensure the meds keep doing their job. Today, Cohen is hitting all the milestones of a typical two-year-old – chatting up a storm and getting into everything!
“Thanks to our incredible specialists and generous support through the Children’s Hospital Lottery of these important technologies available to Cohen when he needed them, a potentially horrible situation turned into a quick diagnosis and right path of treatment that has changed the trajectory of our son’s life,” says Hayley. “We are so grateful.”
Proceeds of the 2022 Children’s Hospital Lottery supported the Alberta Children’s Hospital Epilepsy Program, funding life-saving, life-changing technology to diagnose seizures sooner and more accurately than ever before.
A new vision for the Alberta Children’s Epilepsy Program will support the thousands of families who rely on epilepsy diagnosis, treatment and follow-up care in our community. With your help, they will have access to leading-edge, personalized treatments, clinical trials and research that will reach beyond the limited scope of therapies currently available. By combining both prevention and a focus on innovative treatment, this program will achieve meaningful advancements in research and care that will have direct impact on children and families.
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