WATERTOWN — Friends are holding a benefit Sunday for a local 4-year-old Naugatuck girl struggling to grow after loosing most of her intestines to a disease she contracted as an infant.
At one week old, Ava Orsini was diagnosed with necrotizing enterocolitis, a disease that attacked and killed her intestines. Surgeons removed 90 percent of the infant’s small intestine and some of her large intestine, according to her mother, Kate Orsini.
Although the curly-haired 4-year-old can eat normally, her body only absorbs a fraction of the calories she consumes, making it difficult for her to grow.
She spends her nights hooked to two tubes that pump nutrients and formula into her body.
“Without that, she wouldn’t be alive,” Kate Orsini said.
Ava travels to Boston Children’s Hospital once a month for checkups and other procedures.
The disease also left Ava with a faulty autoimmune system, which means frequent trips to the hospital.
“Her sicknesses are always so much worse than her twin sister’s,” Kate Orsini said.
Although both girls were born premature, only Ava contracted the devastating disease.
At 2 months old, Ava had a second bowel surgery and her first heart surgery. At 1.5 years, Ava underwent open heart surgery to close a defect she had been born with. That surgery went well, leaving the short bowel as the main problem she still struggles with, Kate Orsini said.
“She’s OK. She’s holding her own,” Kate Orsini said of her daughter’s current health. “Amazingly, her physical development is perfect.”
Although she is much smaller than her twin sister, Mia, Ava has no cognitive impairment, Kate Orsini said.
Kate Orsini said that Ava is a cheerful young girl who likes Play-Doh, singing, dancing, and being silly with Mia.
“She’s making the best out of the situation,” Kate Orsini said.
All those trips to Boston for Ava’s care, some for 10 days at time, have taken a toll on the family’s finances, as has the cost of insurance co-pays and nursing care.
Kate Orsini works as a third-grade teacher at Maple Hill School in Naugatuck and her husband, Bill Orsini, works as a foreman for Safety Marking Inc. in Bridgeport. Bill Orsini’s mother takes care of the girls during the day.
Cuong Vo, co-owner of The Lounge in Watertown, said he wanted to do a benefit for his friends for a long time, but Bill Orsini refused the help.
“It will help,” Kate Orsini said. “Just to put that money in a medical account just for Ava. We did finally agree to it. I’m really excited about it now.”
The benefit is at 2 p.m. April 6 at The Lounge, 545 Main St. in Watertown. Tickets are $25 at the door. The buffet includes pulled pork, baked chicken, sausage and peppers, pasta, salad, ziti meatballs and lamb chops from Hogtied Backyard BBQ, live acoustic music by Jimmy Hat and John Ryan of Down Monday and raffle prizes donated by Main St. Grill, Ordinary Joe’s, Shamrock Rest, Watertown Meat Center and Labonne’s Market.
Vo and co-owner Rich Leone are donating 20 percent of bar sales, all the food for the event, and the cost of live music in addition to the ticket sales.
Vo said his friend’s daughter likes to laugh and get into mischief, though she’s often reserved because she doesn’t feel well.
“When you turn your back, she’ll start stomping slowly toward whatever you told her not to touch,” Vo said.
Donations can be made here.