Ashley’s Radiothon Story

For most of her pregnancy, Megan had no reason to suspect anything was wrong with her baby.

At 36 weeks, an ultrasound turned her family’s world upside down. Her baby was unusually small and something was wrong with her brain. A few days later, Ashley was born. She exhibited severe microcephaly, a condition where the head is smaller than other babies her size. She had suffered mini strokes in utero and portions of her brain were missing. Ashley’s first 30 days in the world were spent on the neonatal intensive care unit at the Alberta Children’s Hospital. Mom and dad were beside themselves with worry while specialists worked to understand what was going on with their daughter. Ashley was diagnosed with Gould Syndrome, a genetic mutation so rare only a few hundred cases have been confirmed worldwide. The mutation impacts collagen production, which results in small and weak blood vessels and cam impact organs – in Ashley’s case, the brain. 

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Ashley is fully dependent on others for care. She has difficulty swallowing and at six months old she underwent surgery for a G-tube. She is being treated for her seizures and occupational therapists and physiotherapists see Ashley regularly. 

Ashley is adored by her care team and everyone wants to see her reach her fullest potential.

Mom is especially grateful for the Rotary Flames House, which has cared for Ashley when mom and dad needed respite following a car crash, and also after the birth of their second daughter, Natasha. 

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