Ryah's Radiothon Story

Ryah is one happy little girl who has defied the odds. Not only has she exceeded her life expectancy after being born with a life-limiting condition, she is thriving. Ultrasounds throughout Janelle’s pregnancy showed nothing out of the ordinary, so when Ryah was born her parents were shocked to see she had six fingers on each hand, six toes on each foot, and a cleft lip. Their joy turned to worry about what life might be like for her as she grew up with these outward features. But Janelle pushed those worries aside. She knew she could handle any stares or teases as someone who has cared for children with special needs. But when Ryah was taken to the Alberta Children’s Hospital for a suspected diaphragmatic hernia, she was diagnosed with Trisomy 13, and the couple was told their baby might not live past her first week. After just welcoming her into the world, they were suddenly faced with the heartbreaking realization they might soon have to plan her funeral. If she did live, she might never walk, talk, see or hear. They took her home to love and prepared themselves and other kids Janayah and Tanner that their time with her would be short.

When she was two months old, Ryah began having “breath-holding episodes.” While Janelle was getting Ryah dressed for a walk one day, she started crying, went blue, limp, and then stopped breathing. Frightened, Janelle started CPR and called 911, and thankfully, Ryah took a breath. Ryah was taken to the Alberta Children’s Hospital for tests and went home on oxygen. Ryah still has these episodes when she gets upset – the longest one was five minutes. When it happens, her brain shuts off, slowing down her organs. She has been admitted to hospital over 100 times and has coded twice. But thanks to her care teams, her parents know how to manage episodes at home. Because Ryah needs to be watched 24/7, she also has a night nurse. As well, she takes four kinds of medication a day and must be fed through a G-tube. That is why the family is grateful for respite care at Rotary Flames House that allows them a break from caring for her complex medical needs. The first night she and Ryah stayed at the House, Janelle said it was wonderful how the staff just took over her care and let her feel like Mom. Ryah loves going back to the House to play with her friends, get her hair braided by the staff, and visit the Sensory Room, and her parents love the chance to catch up on sleep or take a trip knowing she’s in the best hands. In September, Ryah had cleft lip surgery and extra toes removed and is checking items off her bucket list that include riding in a police car and getting her ears pierced!

Ryah continues to surprise everyone she meets. She crawls, takes steps, and is getting into everything! Her family is grateful for Rotary Flames House who know that while every child cannot be saved, they can all be treasured, and given the best quality of life possible.


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