Layna Lou Durocher is an 18-month-old girl who was born with a rare gene mutation which makes her care very complex.
Sydney Gardiner, Lanya’s mother, shares her story and the toll the condition takes on Layna and her family.
Layna’s mutation is on the PBX1 gene and the exact number of people with this mutation is currently not well established.
“Her diagnosis, it’s extremely rare,” said Sydney Gardiner, Layna’s mother.
Layna’s condition has affected her lungs and kidneys and caused low muscle tone, developmental delays and more.
“She’s very complex,” Gardiner said.
“We’re followed by (every specialty), probably every organ. So neuro, cardio, palliative care, complex care, her pediatrician, diet, pharmacy. It’s very intense.”
Layna is feeding tube- and oxygen-dependent and in her short life, she has already spent more than 430 days in hospital.
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Gardiner said she had to move to Saskatoon from Ile a la Crosse to help provide better access to care for Layna — five hours from their home and support system.
Gardiner said Layna’s care is “not feasible back home,” but despite it all, Layna stays positive.
“You wouldn’t think after everything that she’s been through that she would be this happy.”
Gardiner said the financial toll of having a medically complex child can be a challenge.
“It gets expensive and on top of your bills.”
Gardiner added that Layna’s health care team doesn’t know what the future will hold.
“I don’t think her team and I are looking into the future. We are just taking it day by day,” Gardiner said.
“In order to fix her, she would need a triple transplant, which is very unheard of.”
Gardiner says she tries to think positively but that she still feels the toll of the uncertainty.
“I’m not saying that I’m positive every day like when she’s sleeping, I’m going to go cry.”
But Gardiner says Layna is very outgoing and her happiness helps keep her positive among all the struggles.
