Families of kids with complex needs, like this Windsor 5-year-old, can now access new funding

Caroline Warkentin often refers to her five-year-old daughter Rylee as the family's "feisty little warrior."

Born without the left side of her diaphragm (a condition known as congenital diaphragmatic hernia, or CDH), Rylee's life started with 117 days in a neonatal intensive care unit. 

Now, new money could help offset costs for families like hers in the Windsor area.

Access to the Family Support Fund is reserved for families who have kids with complex needs or disabilities in Windsor-Essex and utilize a service at the John McGivney Children's Centre. It will be limited to $500 per family. The $90,000 donation from the Solcz Family Foundation will be spread out over the next three years. 

Rylee's parents Jason and Caroline say the journey to give their daughter a full life has been met with support.

She works with therapists at John McGivney to help with her development and lives most days with a contagious smile, they say.

But despite the availability of resources now, the experience has also meant coming to terms with quickly accumulating costs, an experience not uncommon for families like the Warkentins.

"We [quickly] learned while we were in the hospital things like her oxygen, for example, would only be 75% covered, so then you have to come up with the other 25%," said Caroline.

"When we heard that we just thought, 'How are we going to afford that?'"

Babies born without the left side of their diaphragm can have their organs move up in her chest, limiting the development of the lungs and putting pressure on the heart.

For Rylee, that means feeding through what's called a gastrostomy-button (or G-button) using an oxygen source and some more specialized needs. 

According to Caroline, 24 food packages for feeding cost about $250. When replacing the G-button every three months, that is between $150 and $300, usually buying backups in case one falls out.

Then, there are special one-time costs that can reach up to $1,000 at a time and are not always covered. 

Caroline says they are "lucky" to have good coverage, but not every family has the knowledge or support to know how much they have to cover out-of-pocket and what's available to them. 

"A lot of these families may not know about certain funding, or they just can't get it."

Kyrsten Solcz is the executive director of the Solcz Family Foundation and says the John McGiveny centre brought the idea forward. 

"It was actually created by them and as soon as we heard about it, we knew this is something we want to be a part of," said Solcz.

The foundation has worked with addiction, mental health and children who have complex needs and disabilities in the past. They hope to respond to the needs in the community with their support and have been running since 2016. 

"[Others] can contribute to this fund, as well. And I hope they will, so it can become a larger fund to support families for a long time." 

"It's very expensive right now to even buy groceries ... So you add in a child with complex needs and the costs associated with that, it's a big responsibility for the family to have."

Caroline Warkentin says all her family wants is for Rylee and other kids like her to live a life of equal opportunity, without barriers. 

"Rylee is doing well now. But really, we want her to be accepted for what she has."

"We get a lot of people that want to, almost fix her. But really, we just want the support and understanding for these kids. They are perfect just the way they are."