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Breya remembers celebrating the opening of the new Alberta Children’s Hospital as a backup singer for Paul Brandt, never expecting to have to use it. Five years later, it became a second home when her and her husband Devon’s son Bowen developed a rare epileptic disorder that affects his autonomic nervous system, resulting in seizures, involuntary movements and breathing difficulties. Because of his compromised immune system, a tiny virus can turn to pneumonia. And whenever he is sick with these abnormal colds, he can have more than a hundred seizures a day.
Bowen was a month old when his mom first noticed something was wrong. They were driving home from a visit with Santa when she looked over and saw her son was purple. They rushed to emergency at the Alberta Children’s Hospital where specialists determined Bowen’s oxygen levels were dangerously low, though why was a mystery. Bowen returned to hospital for 10 days with a bout of pneumonia. Then, in January, a home nurse checking on Bowen witnessed his first seizure. The family met a neurologist who monitored his brain activity with an EEG and Bowen’s parents were told to bring him back in if he had more seizures.
She hoped that would be the last time but not long after, Bowen, then three months old, convulsed in her arms. He was having a Grand Mal seizure and it lasted 45 minutes. Bowen was admitted for more testing on his brain and met Dr. Bello, who they call “a gift from God.” Thankfully Dr. Bello was able to find the right medication to control Bowen’s seizures. And thanks to donor-funded KidSIM, and a KidSIM doll purchased through Radiothon, Breya and Devon have learned how to confidently administer rescue medication to her son. Bowen returns to hospital for neurology appointments and physiotherapy but is a happy, bright boy who loves preschool and dressing up as Captain America.
Breya says the hospital is a community of support. She’ll never forget the nurse who gave her tips on nursing a fragile baby and the unit 3 nurse who comforted her during the moments she felt the most helpless. When all she could do was weep on the floor, that nurse sat down beside her.