“When you’re in the midst of a waking nightmare it’s nice to have someone that’s able to take a little bit of that pressure off and just help.” Grateful, this is what Heather Sperry said when recently asked about her experience with the Twinkie Foundation.
Expecting her second child, Sperry was referred to the genetics and high-risk obstetrics programs at Mount Sinai Hospital in Toronto in July 2018 after an ultrasound detected problems with her pregnancy. She began travelling weekly so doctors could monitor the baby’s health, but as time passed her pregnancy was met with further complications and Sperry was admitted to the hospital for daily monitoring.
In October 2018, Sperry’s daughter, Leah was delivered six-and-a-half months into her pregnancy. She was admitted to the neonatal intensive care unit (NICU) at Mount Sinai.
With her husband and two-and-a-half-year-old son in Sault Ste. Marie, and Heather and Leah in Toronto, the Sperry family was torn in half with over 700 kilometres in between them. Regular travel and accommodations so the family could be together added up quickly, carrying a significant and unsustainable financial burden.
The Sperry’s needed help.
“When she [Leah] was born we contacted the Twinkie Foundation. They came through within days with some funding for us to help pay for the Ronald McDonald House or to help with other accommodations,” says Sperry. “For parents struggling with a child in the neonatal intensive care unit, it is a huge relief to have that one piece taken off our shoulders - just not to have to worry about that.”
The Twinkie Foundation was co-founded and registered in 2017 by Karen and Greg Lefave after experiencing the challenges having to travel to Toronto for the healthcare of their twin girls, Georgia and Charlize (Charlie). On top of pregnancy complications and the twins’ premature birth, Charlie was born with congenital heart disease and needed critical open-heart surgery mere weeks after her arrival. “I had literal nightmares about fathers out there that had to deal with what we had to deal with, but didn't have the means,” said Greg Lefave in a recent Facebook post. “Charlie was a minute-by-minute baby, but we were fortunate enough that we had the means where I could visit her every weekend. I kept thinking of those kids that didn't make it and the father's that couldn't afford to see their child one last time. It was the most awful thought process I've ever been through. This is how The Twinkie Foundation was born. We want families to focus on what matters the most.”
Families like Heather Sperry’s.
Not long after Leah Sperry was admitted into the NICU circumstances surrounding her health changed.
“Within 21 days of being in the NICU Leah’s screen came back positive for Cystic Fibrosis,” says Sperry. “We were shocked and overwhelmed.” On February 25, 2019, Leah and her mother were transferred to The Hospital for Sick Children in Toronto where they remain and continue to receive ongoing care.
“If it wasn’t for the Twinkie Foundation we’d be financially tapped out,” says Sperry.
“The Twinkie Foundation continues to help pay for our Ronald McDonald House accommodations so I’m able to see my husband and son. It means we can still be a family which is huge. This is one less thing we have to worry about.”
Like the Sperry’s, each time a family is forced to travel to seek care for their ill child they incur extraneous financial burden. The cost of food, hotel rooms, flights and time off work all add up, creating emotional and physical stress for those in need of support.
The Twinkie Foundation believes that no parent should have to worry about the financial burden that comes with travelling for healthcare on top of having an ill child.
“Karen and the foundation have been so awesome to work with and very supportive. We are incredibly appreciative that there’s a charity out there that’s able to help in these situations.”
How does it work?
The Twinkie Foundation is funded by donations and through fundraising events organized by volunteers. These funds are allocated to families living in Sault Ste. Marie and area who are in need of financial support to travel for specialized medical treatment for their child. Families can apply online here.
Detailed information on the application process can be found at www.thetwinkiefoundation.ca.
How can you get involved?
Follow the Twinkie Foundation on Facebook for information on upcoming fundraising events like the Sault Ste. Marie Can/Am Poker Run charity rides being held on Sunday, July 28. Tickets can be purchased here. Donations to support the Twinkie Foundation can also be made online.
For more ways to get involved with the Twinkie Foundation, contact Karen Lefave at [email protected].