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The Clark family has had a long relationship with the Alberta Children’s Hospital that began with their son Drew suffering a grand mal seizure. In the following months, the Clarks learned Drew likely suffered from a mitochondrial condition and then, that it was terminal. Specialists did a liver biopsy, a skin biopsy, a muscle biopsy, MRIs and tons of blood work trying to confirm a diagnosis. However, it wasn’t until nine months after Drew passed away at 14 months old that they could definitively say he suffered from a genetic syndrome called Alpers disease, which causes seizures, low muscle tone, and low weight gain. It was devastating for the Clarks, but they were incredibly appreciative of the staff they met in Unit 3, where Drew had stayed, as well as the grief counselling provided through Rotary Flames House.
Unfortunately, their journey was not over. Their daughter Piper was failing to meet milestones. Kari and Jordan were amazed how far genetic screening had advanced since Drew’s diagnosis. Rather than undergoing multiple, invasive tests and surgeries over months, Piper’s genes were screened with a single test. The results were back in a matter of weeks, but confirmed what her family had been dreading: She suffered from Alpers disease too. Kari says it was the worst day of her life. The Clarks treasured the time they had with Piper before she also suffered a grand mal seizure and went to Rotary Flames House for palliative care. There, Kari and Jordan could just be mom and dad and enjoy their last days with Piper, who passed away at 17 months old.
Last year, the Clarks welcomed baby Bennett. Kari was haunted by the possibility that he might suffer from the devastating condition that took two of her other children. She was too scared to sleep, worrying she’d find Bennett in a grand mal seizure in the middle of the night like she had with Drew and Piper. Dr. Khan decided to run genetic testing on Bennett, so the Clarks could have peace of mind. It was a wonderful gift, as Bennett’s tests came back clear. Kari considers that the single best day of her life.
The Clarks have now helped raise more than $100,000 to support research and genetic screening at the Alberta Children’s Hospital. They are so grateful for the dedicated staff, from Dr. Khan and Dr. Kirton, to specialists on Unit 3 and at Rotary Flames House. They are especially grateful for the advancement of genetic screening, which has provided them the gift of quick diagnosis twice.