When Lyla was born, there were no indications that she had any health issues. She was a beautiful, full-term, healthy baby. But at just 26-days-old, that would all quickly change when Lyla had her first seizure.
In that terrifying moment, her parents immediately took her to the IWK’s emergency department. “We had never experienced anything like this before. We were so scared,” her mom, Emily, recalled.
The IWK team quickly completed tests, bloodwork, and other diagnostics to better understand what was happening with Lyla.
Her family was full of hope that the seizures would stop. But they didn’t.
By the time Lyla was 12-weeks-old, the seizures were more frequent and had escalated from simple partial seizures to Infantile Spasms. Emily recalls, "Neurology was our lifeline."
By the time Lyla was six–months-old, she had lost most of the motor skills she had achieved. She could no longer roll over or even hold her head up.
Lyla underwent further genetic testing. Emily and Rob, Lyla’s dad, received an official diagnosis when Lyla was 15-months-old — she has CDKL5 Deficiency Disorder (CDD), a rare neurodevelopmental condition. There is currently no cure for CDD.
Lyla, now 10-years-old, has ongoing complex needs and continues to rely on the IWK for specialized care. In fact, she has seen almost every department at the IWK — from neurology to endocrinology, orthopedics to gastroenterology.
Lyla eats through a gastrostomy (g) tube and is a full-time wheelchair user. Emily explains, "We don't chase seizures anymore. They are ingrained in her very makeup, so we treat what we can and focus on her quality of life." Lyla has had several surgeries performed at the IWK such as the g-tube and a Vagus Nerve Stimulation (VNS) for seizure treatment.
Emily shared that the IWK has made an incredible difference in her family’s life. “I can’t imagine our lives without the IWK in our community,” says Emily. “With Lyla’s complex needs, I am so grateful we have this world-class facility in our community.”
With rare conditions such as CDD, the future can hold many unknowns. Lyla and her family try not to live in the ‘what ifs’ of such a heavy diagnosis and instead focus on the present and making happy memories together.
