SASKATOON — Sydney Gardiner is appealing to kind-hearted individuals for financial help with hospital expenses for her two-year-old daughter, who was diagnosed with a rare genetic disorder.
Layna Lou, who turned two on June 14, was born with a PBX1 genetic mutation, which causes abnormal development affecting the kidneys and other parts of the body, such as the ears and heart. PBX1 is a crucial transcription factor involved in embryonic organ formation.
Gardiner said her daughter was diagnosed with left lung hypoplasia, chronic kidney disease (horseshoe kidneys, where the two kidneys fuse), pulmonary hypertension, hydrocephalus and low muscle tone.
“Layna was unresponsive and immediately intubated when she was born [in 2023]. She has spent well over 500 days in hospitals, between the Jim Pattison Children’s Hospital and the Stollery Children's Hospital in Edmonton,” Gardiner told SaskToday.
“She has spent more than a month in the Neonatal Intensive Care Unit and eight months in the Pediatric ICU. She has been in and out of pediatrics and PICU since March 2024, and requires 24/7 care from either me or her dad.”
Gardiner said the mounting medical bills and other expenses since their move from Île-à-la-Crosse to Saskatoon due to Layna’s medical condition have forced them to start a GoFundMe page to raise $2,600. It has already risen $925 since the launch a few days ago.
“We have done fundraisers in the past that friends and family supported. We received help from Kinsmen Telemiracle, but since we now live in Saskatoon, they can no longer assist us. We are asking for help with life expenses — as you all know, life is so expensive,” said Gardiner.
She said she is taking one day at a time in dealing with her daughter’s medical condition, where some days are easier. Despite having a job, she usually takes at least two days off each week to care for Layna, making her current salary insufficient to cover the bills.
Obtaining social assistance and employment insurance is also not an option for them to cover Layna’s medical costs. Gardiner has two children with her ex-husband and one with her current partner, who also has a child from a previous relationship.
She added they had nursing staff funded through Jordan’s Principle, as she and her partner work, but as of June 30, the contract is being temporarily suspended due to missing information.
“This is the second time the contract was temporarily stopped due to either the social worker not submitting the paperwork on time or the wrong dates. This is the second time they put a hold regardless of the situation,” said Gardiner.
“They know nothing has changed with Layna’s status, but they are still putting funds on hold. Why? I have no idea. I could appeal, yes, but I haven’t, as it’s currently on hold. That means I will no longer be able to work for an unknown period due to not having the nursing coverage.”
Gardiner said they rely solely on their jobs to pay the bills, and they have a home care nurse who works only one day a week for six hours.
Layna is oxygen dependent and has a gastrostomy tube (G-tube), for nutrition, hydration and medication. The G-tube is directly inserted through the abdominal wall into the stomach to help a person who cannot consume anything by mouth.
