Layna Lou Gardner is an 18-month-old lady who was born with a uncommon gene mutation which makes her care very advanced.
Sydney Gardner, Lanya’s mom, shares her story and the toll the situation takes on Layna and her household.
Layna’s mutation is on the PBX1 gene and the precise variety of individuals with this mutation is presently not nicely established.
“Her analysis, it’s extraordinarily uncommon,” mentioned Sydney Gardner, Layna’s mom.
Layna’s situation has affected her lungs and kidneys and brought about low muscle tone, developmental delays and extra.
“She’s very advanced,” Gardner mentioned.
“We’re adopted by (each specialty), most likely each organ. So neuro, cardio, palliative care, advanced care, her pediatrician, eating regimen, pharmacy. It’s very intense.”
Layna is feeding tube- and oxygen-dependent and in her brief life, she has already spent greater than 430 days in hospital.
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Gardner mentioned she needed to transfer to Saskatoon from Ile a la Crosse to assist present higher entry to look after Layna — 5 hours from their house and assist system.
Gardner mentioned Layna’s care is “not possible again house,” however regardless of all of it, Layna stays optimistic.
“You wouldn’t assume after every little thing that she’s been via that she can be this joyful.”
Gardner mentioned the monetary toll of getting a medically advanced youngster could be a problem.
“It will get costly and on high of your payments.”
Gardner added that Layna’s well being care staff doesn’t know what the longer term will maintain.
“I don’t assume her staff and I are trying into the longer term. We’re simply taking it daily,” Gardner mentioned.
“So as to repair her, she would wish a triple transplant, which could be very remarkable.”
Gardner says she tries to assume positively however that she nonetheless feels the toll of the uncertainty.
“I’m not saying that I’m optimistic day-after-day like when she’s sleeping, I’m going to go cry.”
However Gardner says Layna could be very outgoing and her happiness helps maintain her optimistic amongst all of the struggles.
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