Layna and Family

Hi, my name is Sydney and this is Layna Lou. Layna was born with an extremely rare genetic disorder called PBX1 Genetic Mutation. She has many diagnosis’s such; left lung hypoplasia, chronic kidney disease (horeshoe kidneys), pulmonary hypertension, hydrocephalus, low muscle tone. She is GTube and Oxygen dependent. Layna has spent over 480+ days. Mainly at Jim Pattison Children’s hospital in Saskatoon, Sk but we also spent time at the Stollery Children’s hospital in Edmonton,AB.

Layna requires 24/7 care from either mom/dad or nursing staff who was being funded through Jordan’s Principle so mom and dad can work, as of June 30th 2025 the contract is being temporarily stopped as some information was missed and so that means I will no longer be able to work for not sure how long due to not having the nursing coverage and I rely on my job to pay the bills. I do have home care nursing but that’s only 1 day a week and at 6 hours. I could off for a couple weeks to a month or 2.

We are asking for help with life expenses as you all know life is so expensive and with me being off or working 1-2 days a week isn’t going to pay all the bills we have. Social assistance isn’t an option. EI isn’t an option.

We do the best we can with the situation we are in and some days are harder than others.

Thank you in advance for your help. We appreciate each and everyone of you.