Published January 23. 2014 4:00AM Updated January 23. 2014 4:26PM
A charity with Waterford roots and people from across southeastern Connecticut have opened their hearts and wallets to help the family of a Griswold toddler who lives with a rare and potentially fatal condition.
Audrey Pavlak, a playful 17-month-old who recently started walking, copes with short bowel syndrome, a congenital disorder that prevents the absorption of nutrients. When she was released from the neonatal intensive care unit, doctors recommended 40 to 60 hours of home nursing care each week. But the family's insurance plan, TRICARE, won't cover that.
And Brianna Pavlak, Audrey's mother, also cares for her husband, Andrew, a National Guard veteran who suffers from brain injury, post-traumatic stress disorder, depression, back problems and hearing loss as a result of a Humvee rollover accident in Afghanistan.
The Pavlaks don't qualify for TRICARE's extended health care option because Andrew is medically retired. Their income is too high to be eligible for the state's free HUSKY health insurance for children, but isn't high enough to afford supplemental insurance or to hire a nurse.
"I really have exhausted all possible options to get nursing, to get help for her," Brianna Pavlak said. "It's just trying to get through the day from one day to another."
Frank Matovic, president of the Save the Kid Fund's board of directors, said a number of board members knew that they could help after reading an article in The Day.
"We pride ourselves on being able to help families that fall between the cracks," Matovic said. "We're dedicated to help kids and we certainly are able to help the kid in this situation."
The Save the Kid Fund, which began in 1985 at Millstone Power Station, has raised nearly $1 million for local causes since then. It is operated almost entirely by current and retired Millstone employees, and a large portion of the fund's contributions come from people associated with Millstone.
The fund to help Audrey began with $1,700 in seed money and a delivery of diapers. All of the money donated to the Pavlak fund will directly benefit the family, whether it's used to buy medicine, formula or other necessities, said Matovic, of Preston.
Other groups and individuals have offered their assistance since reading about the Pavlak family. Online fundraisers have raised hundreds of dollars for the family so far. TRICARE has offered to provide the family with case management support, too.
"People have read the story and are willing to help. It's fantastic and amazing to have that support from the community," Brianna Pavlak said.
But, she said, it's been "more of the same" in trying to get more coverage from the insurance company.
"There's been no progress, just more frustration," Pavlak said. "More attention has been brought to the issue, but we're still getting nowhere."
Without the help of a full-time nurse or health aide, the around-the-clock care of Audrey, which includes administering medications, feeding done mainly through tubes, frequent diaper changes and various tests, falls squarely on her mother's shoulders.
"I'm up every 2½ hours, sometimes more than that," Pavlak said. "You do this because you love your child and you want the best for them. But one person can only handle so much."
Thankfully, she said, she feels a sense of community and support from parents of other children with short bowel syndrome, some of whom have been in situations similar to the Pavlaks'.
And according to Matovic, plenty of people who had not heard of short bowel syndrome before reading about Audrey Pavlak are interested in helping the family, too.
"My heart grows each time I speak to someone who wants to help," Matovic said. "It's heartening to know that there are more good people in the world than bad."
HOW YOU CAN HELP
Make checks payable to "Save the Kid Fund" and write Audrey Pavlak's name on the memo line. Send checks to: Audrey Pavlak, c/o Save the Kid Fund, 33 Stanton Lane, Preston, CT 06365. For more information about the fund, call (860) 444-5373 or visit www.savethekid.org.