For at least two patients of Connecticut Children’s Medical Center, the annual QTHON Miracle Network Dance Marathon has been a life-changing experience.
QTHON has raised nearly $720,000 in support of patient care at Connecticut Children’s over the past seven years. But as the kids’ parents, Heather and Chris, can attest, the student-run event has been a game-changer for their family.
For their 14-year-old daughter, Ally, and 8-year-old son, Colin, the experience has opened new doors and has led to a new normalcy that Heather said they could only dream about in the past. “It’s truly been a gift,” she said.
An Unexpected Transformation
For Colin, who was diagnosed with autism and epilepsy at 18 months of age, leaving the house had been a challenge until he discovered the joys of QTHON, a year-long fundraising effort that culminates in a 10-hour dance marathon on the Quinnipiac University campus. “He was overwhelmed by crowds,” his mother explained. “It was like wrestling the alligator to get him to leave the house.”
When Colin was 3, he attended his first QTHON dance marathon—with much trepidation. “He wore noise-cancelling headphones on his ears, and he stayed in the hall,” Heather recalled.
Something special happened the next year, however, when he attended the event as a Connecticut Children’s patient ambassador.
“Colin asked me to take his ‘ears’ off – something he had never done before,” Heather said. “I couldn’t believe it. He jumped on the stage and started dancing with the students. This was a child who did not like being around groups,” she added. “I cry just thinking about it.
“It was such a life-changing moment for him,” Heather said. “And it was like building-blocks for our family. It was like – ‘If he can do this, what else can he do?’’’
Heather said the Quinnipiac students treat Colin “like a king,” and his comfort level with them has opened new doors for their family, allowing them to attend shows and dinners out and even take a family trip to Florida – things they had not thought possible before.
“It’s so freeing,” Heather said. “Now we can do everything together.”
A Life-Changing Experience
Heather said QTHON has been a life-changing experience for Ally as well.
“At QTHON, the children have an opportunity to share their stories with the students, who are very supportive,” Heather said. “Each child also receives a box filled with encouraging notes written by the students.
“Ally grabs like 10 notes out of the box at a time and brings them with her to any stressful tests or when she knows she will be an inpatient at the hospital,” Heather said. “She feels like she has people who support her. She has all of these mentors who lift her up.”
At age 5, Ally was diagnosed with cyclic vomiting syndrome – a diagnosis the Beacon Falls residents had been searching for since their daughter was 11 months old. In her first few years of life, Ally was in and out of the hospital and, when she was in kindergarten, she had missed 60 days of school.
“Everyone thought it was virus,” Heather recalled. But she and Chris thought it was something else and brought their daughter to Connecticut Children’s, where she was diagnosed with the rare disorder that is characterized by recurrent, episodes of severe nausea and vomiting.
Although the exact cause of cyclic vomiting syndrome is unknown, the symptoms in Ally’s case can be triggered by stress or excitement. Today, she is followed in Gastroenterology and Neurology at Connecticut Children’s, where her condition is kept under good control.
“Now I have a 14-year-old who wants to be an occupational therapist and wants to go Quinnipiac,” Heather added. “She’s so motivated by it.”
When Quinnipiac University hosts its 8th Annual QTHON Miracle Network Dance Marathon on March 23, Ally and Colin will be there along with their parents. Quinnipiac University has been hosting the QTHON dance marathon for seven years now, and each year the students outdo themselves in raising money for Connecticut Children’s. In 2018, they broke records, raising $265,431.79, a 22 percent increase over the previous year.
Last year, the event had more than 1,560 participants, along with the support of 66 different student organizations on campus. The money raised in 2018 went to support areas of greatest need at Connecticut Children’s, including funding toward the Medical Center’s new Infusion and Dialysis Centers.
“Like Connecticut Children’s, QTHON has a special place in our hearts,” Heather said. “At QTHON, my children are surrounded by students who ‘get it.’ My kids love being with the students and they love everything about it. It’s a special experience for any kid to be part of,” she said.