Layna Lou Durocher, a one-and-a-half-year-old girl, was born with an unusual genetic mutation that necessitates intricate care. Her mother, Sydney Gardiner, opens up about the emotional and physical challenges this rare condition imposes on their family.

The mutation impacting Layna is situated on the PBX1 gene. The prevalence of this specific mutation is not yet fully understood due to its rarity. Layna’s health complications are significant, affecting her lungs, kidneys, leading to low muscle tone, developmental delays and more.

Sydney Gardiner explains the intricacy of Layna’s case, “We’re followed by (every specialty), probably every organ. So neuro, cardio, palliative care, complex care, her pediatrician, diet, pharmacy. It’s very intense.”

Due to the complexity of her condition, Layna is dependent on a feeding tube and oxygen. In her brief lifespan, she has spent over a year in the hospital.

The family had to relocate to Saskatoon from Ile a la Crosse to ensure better medical facilities for Layna. This move placed them five hours away from their home and support network. Despite the hardships, Layna remains a beacon of positivity.

Providing for a medically complex child comes with a high financial burden. “It gets expensive and on top of your bills,” says Gardiner.

The uncertainty about Layna’s future is a constant worry for the family. “In order to fix her, she would need a triple transplant, which is very unheard of.” Despite the challenges, Sydney Gardiner tries to maintain a positive outlook but admits the uncertainty often takes its toll.

However, Layna’s cheerful nature and resilience provide a source of strength for the family amidst all the struggles.

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