Lyna Durocher is an 18 -month -old girl who was born with a rare genetic mutation that makes her care very complex.
Sydney Gardiner, Lanya’s mother, shares her story and the assessment of the condition of Layna and her family.
The mutation of Layna is on the PBX1 gene and the exact number of people with this transfer is currently not well established.
“His diagnosis is extremely rare,” said Sydney Gardiner, Layna’s mother.
The state of Lyna affected her lungs and kidneys and caused a low muscle tone, development delays and more.
“It is very complex,” said Gardiner.
“We are followed (each specialty), probably all the organs. Thus, neuro, cardio, palliative care, complex care, pediatrician, diet, pharmacy. It’s very intense.
Layna feeds the tube and dependence on oxygen and in her short life, she has already spent more than 430 days in the hospital.
Get health news on health
Receive the latest medical information and health information provided to you every Sunday.
Gardiner said that she had to move to Saskatoon from Ile à la Crosse to help provide better access to healthcare to Layna – five hours from their home and their support system.
Gardiner said that Layna’s care was “not achievable at home”, but despite everything, Layna remains positive.
“You wouldn’t think after all she experienced that she would be so happy.”
Gardiner said the financial number of having a medically complex child can be a challenge.
“It becomes expensive and in addition to your invoices.”
Gardiner added that Layna’s health care team does not know what the future has in store for us.
“I don’t think his team and I examine the future. We take it day by day, ”said Gardiner.
“In order to repair it, she would need a triple transplant, which is very unknown.”
Gardiner says that she tries to think positively but that she always feels the balance of uncertainty.
“I’m not saying I’m positive every day like when she sleeps, I’m going to cry there.”
But Gardiner says that Lyna is very out of the way and that her happiness helps her to keep her positive among all the struggles.
& Copy 2025 Global News, A Division of Corus Entertainment Inc.