Joy turns to sadness with a devastating diagnosis
Having a family was always part of Kitty and Jamie Goffaux’s plan. After having trouble getting pregnant on their own, they turned to in-vitro fertilization. On the third round, they found out they were pregnant with twins.
Twins, Tommy and Ashley, were born three and half weeks early in February of 2009. Both weighing over five pounds.
But Kitty and Jamie’s joy quickly turned to sadness, when the doctors delivered heartbreaking news.
“She (doctor) explained that they both had a rare genetic disorder called Zellweger Syndrome,” Kitty said. “Their cells basically break down while their building so it’s a fight. Are they generating cells faster, are they breaking down faster?”
"The disorder is a lottery ticket you never want to get," Jamie said. "It had to be something both Kitty and I carried and we both had to carry it on the exact same DNA chain in order to happen. If I remember correctly, the odds, they said, it was 1 in 750,000 that fraternal twins both got it.”
Doctors gave Tommy and Ashley less than a year to live.
“We just all sat there together and cried," Kitty said.
Bringing their babies home
Wanting their babies to be comfortable and surrounded by as much love as possible, Kitty and Jamie fought to bring them home; learning how to change feeding tubes, administer medication, oxygen, and deal with seizures.
“All things that no parent wants to know how to do," Jamie said.
Hospice would also go home with them. Kitty and Jamie poured their heart into those babies, showering them with love and happiness. Every day was a milestone.
“Those two kids did more in the time that they had than some kids do their entire childhood. They had more friends, more family," Jamie said.
But those milestones would come to an end. Ashley passed away first in May of 2009. Tommy died exactly three months later.
“We just try to talk about them and remember and share memories with people. I tell everyone that my biggest fear is that they’ll be forgotten,” Kitty said.
Holding onto hope
Kitty and Jamie would eventually look at their options for more children. Doctors would not use Kitty’s eggs again. Determined to grow their family, they started doing their research.
“Our options were to adopt or we could use donor eggs if we wanted, which she had mentioned to us a few years earlier when we started this process and I was like there’s no way we’d ever do anything like that,” Kitty said.
Kitty and Jamie decided to use an egg donor. But there was one thing standing in their way. The cost.
Infertility and the Cade Foundation
Years ago, insurance had covered most of their IVF, but that wouldn’t be the case this time. That’s when they turned to the Tinina Q. Cade Foundation, an organization that provides support and financial assistance to help families overcome infertility.
Kitty and Jamie were awarded two separate grants together worth $10,000.
“Kitty and Jamie are exactly what we were looking for,” Says Dr. Camille Hammond, the CEO of the Cade Foundation.
“They were a family that had tremendous hardship but were still holding onto that list glimmer of hope," Dr. Hammond said.
Kitty and Jamie are not alone. Dr. Hammond said infertility affects 1 in 10 families. She encourages families to seek help and support.
“Part of the reason we do this is because one, there should be no shame. And two, it’s medical not moral. There’s nothing wrong with you and the same way you seek council for diabetes, high blood pressure, you should feel that same type of freedom getting support for fertility treatment," Dr. Hammond said.
As of November, the Cade Foundation will have awarded grants to 70 families. There are currently 50 Cade babies, including Emmitt, Jamie and Kitty’s 3-year-old son.
A boy so special
Emmitt is keeping Kitty and Jamie busy. He’s is extra special and an inspiration for other families.
The Cade Foundation’s largest fundraiser is Saturday, November 5, 2016 at the World Trade Center.
Learn more about grant programs at the Cade Foundation.