LESLLOYD F. ALLEYNE/Journal Inquirer
LESLLOYD F. ALLEYNE/Journal Inquirer
SOMERS, Conn. (AP) – Some who float in Wendy McCloskey’s circle of friends found it peculiar that she wanted to bring her newborn home.
The infant, after all, was not expected to live, the victim of a rare disorder that introduced an extra chromosome to her DNA.
But where they saw an unhealthy degree of morbidity, McCloskey and her husband, Bill, saw an opportunity to bathe little Macie Grace in devotion.
“You wouldn’t believe the things people would say,” McCloskey said, now able to chuckle when recalling that time.
“We wanted our daughter to know that she was loved,” she said. “We got to bring her home, for a day.”
A year after their child died in December 2007 after six days of life, the McCloskeys launched the Macie Grace Foundation, an endeavor that provides a $1,000 scholarship to a high school senior who overcomes a formidable challenge.
The foundation also promotes a bereavement program called Baby Steps for families who’ve lost a child.
In awarding a scholarship, the foundation looks for examples of teenagers who answer the bell after being staggered by the blows one’s life can deliver.
“We don’t necessarily look at top students,” McCloskey said. “We look at students who have overcome a major challenge and learned from it and persevered.”
The foundation so far has distributed 25 scholarships, all to students at either Somers or Stafford high schools, but McCloskey said the intention is to consider college-bound seniors at any school in the region. Much of the work has been done in partnership with the Somers Lions Club.
Meanwhile, the Somers couple hopes to expand the reach of Baby Steps. The group meets each month. Some meetings draw about a dozen people, fewer in the summer months.
Hartford Hospital, where Macie Grace was born, provides a Baby Steps brochure with an array of informational material given to families. McCloskey hopes to incorporate more hospitals and also religious centers in finding those who may benefit from a helping hand.
“When I was pregnant, we were given no support, and that’s a very devastating problem . Your world just changes,” she said. “We had four healthy children and with the fifth child we got this diagnosis.”
That diagnosis came when McCloskey was three months pregnant, prompting a wrenching period of introspection for the couple to determine what to do next.
“The majority of these moms and dads decide to terminate pregnancy. We decided to pray a lot and to say, ‘Hey, we’re going to see.’”
“That’s a very personal decision,” she said. “We chose her, but for some people it’s too much to handle.”
Macie Grace’s genetic disorder is known as Trisomy 13, which along with Trisomy 18, are fatal versions. But another variation of the chromosomal condition, Trisomy 21, better known as Down syndrome, sees children grow into adults.
McCloskey is now offering support to a family in Hartford Hospital’s neonatal unit with a newborn diagnosed with Trisomy 13. That infant, about two months old, has long beaten the odds, since virtually all such diagnoses result in a child being stillborn or living a matter of days, if not hours.
Much of the McCloskeys attention these days goes toward fundraising efforts for the foundation. The biggest draw for them is the Race for Macie Grace, which is held as part of the larger ING Hartford marathon and half-marathon in October.
Last year, about 100 people signed up sponsors and participated in the run, bringing in about $10,000 for the foundation.
“We’ve had incredible supporters and amazing generosity,” said McCloskey, a nurse who these days more often assists her husband with his business offering insurance and financial services for seniors.
She speaks openly now about the traumatic time that befell her family in the weeks before Christmas 2007.
It was crucial that they deliver a gift to Macie Grace, she said, and she’s certain it was received.
“We knew she knew she was loved, and that was the best feeling,” McCloskey said. “The worst came after.”
With others questioning the judgment to bring Macie Grace home, it was one of the McCloskeys children, Billy, 11 at the time, who affirmed the decision to keep the girl close.
“This was the best six days of my life,” the boy said shortly after his sister’s six days concluded.