By Joel Wittnebel/The Oshawa Express
The last few months haven’t been easy for Jamie Barrette and Trevor Grant, who have weathered one storm after another.
In January, their twins were born six weeks premature, which isn’t too worrisome for twins.
However, it was only a few days later that it was obvious something was very wrong.
“She would scream after every bottle,” Trevor says of his daughter Shaylyn, now almost seven months old.
And according to Jamie, it wasn’t long before she was vomiting blood, and a couple days later, her brother Grayson was having the same problems.
Both twins were diagnosed with necrotizing entercolitis, which prevents them from digesting their food. Both twins will grow out of the condition, but until then, both require a special infant formula, and it’s not cheap – approximately $80 per can.
The diagnosis led to a struggle with Trevor’s insurance provider, Sunlife, who claimed his work’s benefit package didn’t cover the formula, as it was labeled a supplement, and not necessarily medicinal.
Without Neocate, the only option is to place both twin on a feeding tube.
“It was pretty gut-wrenching and frustrating for sure,” Trevor says.
For Jamie, the struggle to find the funds for the formula was a nightmare.
“There’s been times when we’d gone to bed, before we had the help of everybody, just crying, being like, ‘How are we going to do this?’” she says.
That help came in the form of a Go Fund Me campaign and generous people simply knocking on their doors.
As of The Express deadline, the crowdfunding campaign sits at $19,990.
“It just blows your mind that there are so many nice people out there willing to help strangers,” Jamie says. “They’ve never met the babies, but they take the time.”
A large chunk of that money came in the form of a $10,000 donation from Mills Motors Buick GMC in Oshawa.
Jason Craine, the dealership’s president, says his company came across the story a couple weeks before and was happy to help.
“When it became obvious the family had nowhere left to go and the community had already started to show some support with that small crowd fund, we were happy to contribute,” he says.
Craine explains the donation was motivated by the dealership’s MAK-tivism program, which allows employees to be paid for volunteering in the community.
“That community-minded spirit of the program is what fuelled our decision to help these beautiful little baby twins and get them the nutritional support they need,” he says.
Currently, the family is receiving the formula at cost ($55 per can) from a nearby Shoppers Drug Mart. At that price, Trevor says the large donation will get them three months worth of formula.
Currently the twins go through more than a can each day.
Paying it forward
Looking ahead, Jamie says she is hoping she can make a difference and ensure no other families have to go through what hers did.
“It’s not just about us,” she says. “It’s not just about these babies. There are hundreds of thousands of babies out there that don’t have coverage. So I can’t just battle for these guys – I need to be the voice of all other parents out there.”
Jamie has started a petition that has garnered more than 2,000 signatures in an attempt to lobby the provincial government to have Neocate covered under normal health care plans.
She says she hopes she can get an agreement that would see the government cover the “above and beyond” costs of feeding babies with special dietary needs.
“It is our responsibility to feed them, 100 per cent,” she says. “Then the government should cover the extra.”
Jamie says she hopes she can encourage others to write to their local governments to urge change.
“We need to change it because not everybody has the support that we do,” she says.
To sign the petition, visit Change.org and search “Cover Neocoate” or for more information, visit the “Shay and Gray need neocate” Go Fund Me page.