Three-year-old Ryah Lafreniere 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, but she is also thriving thanks to the love and support of her parents, siblings and her other family – her care team at Rotary Flames House.
Despite her mother Janelle’s prenatal ultrasounds showing nothing out of the ordinary, Ryah was born with six fingers on each hand, six toes on each foot, and a cleft lip and cleft palate. Janelle and husband Riley tried to push aside any worries about what life might be like for Ryah growing up with differences in her appearance and just embraced the joy of adding their new baby girl to their family.
However, their joy turned to sorrow when doctors at the Alberta Children’s Hospital delivered some upsetting news a few days later. Ryah was born with a rare genetic condition called Trisomy 13. Her parents were suddenly faced with the heartbreaking reality their new baby may not live past her first week, and if she did, might never see, hear, walk or talk. Janelle and Riley took Ryah home to love, preparing their other children, Janayah and Tanner, that their time with their baby sister might be short.
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As Ryah suffers from episodes where she stops breathing and has a compromised immune system, she needs to be monitored 24/7. She requires multiple medications a day and relies on feeding through a tube inserted directly into her stomach. Because of the complexity of her condition, her family is grateful for respite care at Rotary Flames House which allows for a break from caring for her medical needs around the clock.
“When we were introduced to Rotary Flames House, it felt like a second home to us,” says Janelle. “The staff take over everything and let you sit aside and just be Mom and Dad, it’s so wonderful.”
Beyond expert medical care, Janelle also appreciates how much personal love and attention her little girl receives at Rotary Flames House.
“She’s always coming home with her hair braided and when I go visit her, she’s just having the time of her life!” says Janelle.
While Ryah loves the programs and playing at the house, her parents have the chance to catch up on some sleep or take a break, knowing she’s in the best hands.
“Respite care is such an incredible gift to families like ours,” Janelle says. “We are so grateful to our team at Rotary Flames House and to generous people in our community who continue to support this amazing place. We would be stuck without them.”
Today, Ryah is taking steps and getting into everything! She can hear using hearing aids, and wears glasses to correct her vision. She is also checking items off her bucket list including riding in a police car and an airplane, and getting her ears pierced! She is also starting preschool!
“Ryah teaches us just how precious life is,” Janelle says. “Seeing her walking and doing all the other things we were told she might never be able to do are moments we truly treasure.”
Respite care is intended to provide family caregivers with time for rest and renewal, which can be especially important for parents or caregivers who have children with a progressive life-threatening illness. Respite visits also provide an opportunity for ongoing evaluation of a child’s health by the palliative care specialists who can recognize and understand subtle changes. During respite time, many parents choose to access supportive counselling and self-care activities. Learn more.