Dartmouth family raising awareness, funds for Boston Children's Hospital

Jan 21, 2018

Grace Hughes’ excitement when she took to the stage in Dartmouth High’s winter production of Elf, Jr. could not be contained, and for good reason: it was her first time returning to her passion following a years-long battle with Crohn’s Disease.

At age seven, the dancer and actress suddenly became ill, explained her parents, Jen and Mike Hughes. Her parents brought her to doctors in the area, but they could not figure out what was causing her weight loss and gastrointestinal issues.

After several misdiagnosis, her parents brought her to Boston Children’s Hospital. For the first time, the family finally had an idea of what was wrong: early onset Crohn’s Disease. But it would take even more time to develop an effective treatment.

Early onset Crohn’s Disease in children is rare. The disease causes chronic inflammation of the digestive tract. That can cause everything from chronic diarrhea to weight loss and abdominal issues, and potentially life-threatening issues like bowel perforation and severe fevers.

Treatment options for children is limited. Many drugs commonly prescribed to adults have not been studied in children, and doctors tried various medications until they could find one that worked.

“It was hit or miss, and she got sicker and sicker,” Mike Hughes said. “She lost weight and she was always tired.”

Finally, she was placed on a treatment regimen and medications which appeared to be effective in managing the disease. Grace was also placed on a strict diet, which for months was confined to liquids administered through a an NG tube inserted in her nose.

Her treatment  required routine drives to Boston to receive injections of medication, and other health care needs that took a toll on the family - Jen and Mike also have four other children. But teachers, friends, and even complete strangers pitched in and helped out.

“Our community really came together,” Jen Hughes said. “Members of a church we did not even belong to dropped off groceries. People we barely knew dropped off groceries. Your community really does come through, and it meant a lot to us. A real lot.”

After nearly two and a half years since first becoming ill, and under supervision from Children’s Hospital doctors, her Crohn’s Disease was in remission. She regained her strength, and despite missing nearly a third of the school year, returned to DeMello Elementary School.

Perhaps the biggest milestone for Grace was the removal of her tube and the return to solid food, although she still follows a strict diet to avoid flare-ups. It was a day Grace was awaiting, and she was put in charge of picking her first solid food in nearly a year.

“We went to Texas Roadhouse and I had hot wings,” Grace said. “I deserved it.”

In remission, her parents and doctors are taking it one day at a time. Crohn's Disease is different for everyone, Jen explained. As she gets older, more treatment options will become available.

Now, the family wants to show their support for the hospital that helped their daughter become healthy again and the countless other families who rely on the hospital.

“We have an incredible hospital nearby with world-class pediatric doctors within driving distance, and it has helped make Grace’s life a whole lot easier, both on herself as well as on us,” Mike Hughes said.

Grace is a Boston Children’s Hospital Patient Partner, which teams hospital patients up with runners in the Boston Marathon to fundraise for the hospital’s Children’s Fund. It funds services to help patients through their hospital stay with services like therapy dog visits.

The Hughes family is teamed up with Taunton residents Amanda and Ryan Surgens, who are running the marathon on April 16. Amanda is no stranger to Boston Children’s - she was a patient there in her childhood.

“It’s amazing that for something unfortunate that happened to both of our families, some good is coming out of it,” Jen Hughes said.

Both families are raising money to support Boston Children’s Hospital in the lead up to the marathon. Fundraising in Grace's name has already hit the $2,000 goal, but any additional funds collected goes right back into making kids more comfortable at the hospital.

Click here to donate and to read more about Grace’s journey.