Georgia MacAloney, 6, of Hudson will be traveling to Washington D.C. to take part in the 18th annual Family Advocacy Day on June 22. (Photo Courtesy of Justine MacAloney)

HUDSON – At just six years old, Georgia MacAloney of Hudson will have the opportunity of a lifetime as she and her family travel to the nation’s capital to meet with New Hampshire’s federal delegation during the 18th annual Family Advocacy Day on June 22.

Georgia has good reason for accepting the invitation to Capitol Hill.

Twenty-four hours after she was born at Lowell General Hospital, Georgia began showing symptoms of what appeared to be a bowel obstruction and was transferred to Tufts Medical Center.

“I knew something was wrong,” said Georgia’s mother Justine MacAloney. “She was vomiting bile.”

After three weeks at Tufts, Georgia was sent home only to be back in the hospital a few days later.

“She wasn’t getting better,” said MacAloney.

Georgia was then taken to Boston Children’s Hospital and within a day she was diagnosed with having a chronic intestinal pseudo-obstruction.

According to Children’s Hospital, the illness is defined as a “rare disorder in which intestinal nerve or muscle problems prevent food, fluid and air from moving through the stomach and intestines. The child experiences the symptoms of an intestinal blockage, though no actual physical blockage exists.” From the 3.7 million babies that are born in the United States every year, approximately 100 of them have this condition.

During the 102 days that Georgia was at Children’s Hospital, Dr. Samuel Nurko devised a plan that would finally allow her to go home at four months old. His plan involved putting Georgia on a drug called Cisapride as well as giving her a colostomy bag and a gastrostomy tube.

MacAloney said caring for Georgia has been a herculean task, particularly with two other children at home.

“It was all hands on deck,” she said, adding that Georgia has been in and out of the hospital 30 times since she was born. “She can go from being fine to being on the floor.”

The last time Georgia was taken to Children’s Hospital she was there for three months. During that time, MacAloney said her daughter underwent four surgeries and had part of her intestine removed.

“She spent her fifth birthday in the hospital,” said MacAloney.

Despite her illness, Georgia has accomplished more than most other kids her age. She has raised $200,000 to help other children with similar illnesses and her picture is on display at both Children’s Hospital and Boston’s Prudential Center. Georgia also got to meet Jake Diekman, a former relief pitcher for the Boston Red Sox, who suffers from ulcerative colitis and established the Gut It Out Foundation in 2017.

However, MacAloney said being part of Family Advocacy Day will be a memory for years to come.

“This is the biggest of them all,” she said.

During her time in the nation’s capital, Georgia will be joined by more than 40 families from 22 states to drive home three key objectives. The first objective will be to continue funding for training new pediatric doctors. The second objective will be to advocate for mental health services and the third objective will be to continue funding Medicaid. MacAloney said that by the time her daughter was six months old, her family had amassed nearly half a million dollars in medical expenses. Therefore, Medicaid has been crucial in paying for things such as medication and formulas.

“Hopefully she won’t have this forever,” said MacAloney. “Time will tell.”

Georgia’s father, Neil MacAloney spoke of his daughter’s resilience.

“When you look at Georgia, you have no clue what she has been through — she looks and acts like any other fun loving six-year-old,” he said. “As serious as her condition is, we have been really lucky to be able to live a somewhat normal life. Having to shift in an instant from having a typical night at home to spending the next days, weeks or months living out of a hospital room really makes you appreciate simple things we all take for granted. Like being able to walk outside to enjoy nature or to be present to listen to kids laughing. Knowing these simple freedoms can be suspended at random make them all the more precious.”

Despite the ongoing challenges, Georgia has turned her illness into a positive experience.

“I am never getting rid of my bag and my tube,” she said. “I never want to get rid of them, they made me really special.”