New foundation to help local families who have sick children hospitalized out of town

Greg and Karen Lefave know what its like to have their hearts ache with worry over sick children.

Karen, especially, knows what its like to be away from her spouse and hometown for months in order to be near her sick children while they are hospitalized out of town.

The Sault couple has now launched an official web site and organized the first official fundraiser for the Twinkie Foundation, established in Jan. 2017.

The foundation is designed to help parents face the financial stress of meeting their living expenses as they stay at living quarters near their sick children at out of town hospitals.

“We want to do whatever we can to help families in this situation because we know what it’s like,” Karen said.

“We vowed once we got home and our girls are healthy and growing, we could start the foundation.”

The Lefaves are the parents of twin daughters Georgia and Charlie (Charlize).  

Karen had a challenging pregnancy, which required her to travel to Toronto to become an inpatient at Mount Sinai Hospital in Apr. 2014.

“The type of twins we had required around the clock monitoring,” Lefave said.

The twins were monochorionic monoamniotic (MCMA), which means they shared one placenta and one amniotic sac, risky because they could have gotten entangled in each others umbilical cords.

Georgia and Charlie were born at Mount Sinai Hospital May 25, 2014, two and a half months premature.

Georgia stayed in Mount Sinai’s neonatal intensive care unit (NICU), where she eventually grew and gained strength.

Charlie was born with congenital heart disease, in need of heart surgery.

“Her heart was working overtime, she was born so early,” Lefave said.

Charlie eventually underwent her first open heart surgery at Toronto’s Sick Kids Hospital Aug. 5, 2014 (followed by a second heart surgery and a shorter hospital stay in 2015).

The twins have had to visit out of town hospitals since, but are doing well.

After their birth, Georgia and Charlie didn’t leave hospital until Sept. 12, 2014, having spent the first four months of their lives in hospital.

Karen spent much of the period between Apr. 15 and Sept. 13, 2014 alone with two sick infants in southern Ontario, while husband Greg was at work in the Sault.

“That was tough, and that was what created our idea for the Twinkie Foundation,” Karen said.

“We were fortunate, we had enough savings, we were able to survive financially, living in another city for five months while keeping up our financial responsibilities at home in the Sault.”

“We were fortunate enough to be able to stay at Ronald McDonald House in Toronto, but our bill there was still $1,700, I ate out every night, and I had a short time there compared to other parents,” Lefave said.

“When we were there, we often thought ‘how do other families do it?’”

“Financially, there’s the stress, it’s exhausting, and you still have a sick child that you’re worried sick over,” Lefave said.

The Twinkie Foundation, Lefave said, is completely funded by donations and through fundraising events organized by the Foundation’s volunteers.

Assistance is given to families after an online application is filled out, and depends on the amount of funds available as donations are given and fundraisers are held by the Twinkie Foundation.

“We just want to help families with their accommodations and their travels, to Sick Kids, to London, to Ottawa, wherever they might need to go if the necessary medical services aren’t available in Sault Ste. Marie,” Lefave said.

“We have an application on the web site, who we are and how we can help them…the application asks for more information about the child, which doctor referred them, which hospital they’re going to, and other details.” 

The Twinkie Foundation’s first official fundraiser will be a pancake breakfast at Superior Heights Collegiate at 750 North Street from 9 a.m. to 1 p.m. Sunday May 7. 

There will be face painting and entertainment for children, Lefave said.

There will be ongoing Twinkie Foundation fundraising events, and according to numbers given to Lefave, the need to help families with sick children is certainly there. 

Lefave said Sick Kids officials told her they received nearly 800 unique patient visits from Sault Ste. Marie children in 2015 and 2016.

To visit the Twinkie Foundation website for more information, including an application form for assistance, click here

Karen Lefave may be reached by email at [email protected]