Liam Doherty was 6 years old when he was diagnosed with Crohn’s Disease, an inflammatory bowel disease with no current cure. Left untreated, the chronic, debilitating condition can cause gastrointestinal symptoms that include diarrhea and abdominal pain along with weight loss, fever and other symptoms.
Liam’s mother, Lauren Doherty, says that when he was first diagnosed, he took it in his stride. Liam is the oldest of the Doherty family from Canton, Mass., which includes father Russ, and siblings Rose, 6, and Patrick, 2. A good student, the third-grader is also a skilled hockey and baseball player. But when the 8-year-old had a flare up of his condition last summer during baseball season, he realized it was a lifelong condition. “That started to wear him down,” says Lauren.
After listening to Liam talk about his concerns, Lauren provided some advice: “When life hands you lemons, it’s time to make lemonade.” Thinking about what his mother told him, Liam decided to take his mother at her word. He opened a neighborhood lemonade stand in September to raise money for Crohn’s research.
With support from his family, friends and close-knit neighborhood, Liam’s first philanthropic venture was a big success. On Oct. 19, he and his family came to Mass General for Children (MGfC) and presented a check for $3,068.50 to Liam’s grateful doctor, Jess Kaplan, MD, pediatric gastroenterologist and clinical director of the Inflammatory Bowel Disease (IBD) Center at MGfC.
“Every dollar is incredibly meaningful for research and clinical innovations to improve the long-term health of our young IBD patients,” says Kaplan. The IBD Center, headed by Harland Winter, MD, cares for about 700 children through a collaborative team approach that includes gastroenterologists, nurses, dietitians, social workers, mental health professionals, pediatric surgeons and others with an expertise in IBD. Helping families learn to communicate and talk about IBD is an essential pillar of the treatment program at MGfC. “We really are treating the family, not just the patient,” says Kaplan.
And the families have responded in a big way. Jill and Dan Horan, their daughter Em, and parents Nicole and Mike Steeves, along with other patients and parents recently formed the Patient and Parent Advisory Team (PPAT). The volunteer organization works cooperatively with MGfC’s IBD Center to creative positive change in four areas: Patient and Family Education, Community Outreach, Patient and Family Experience and Mentorship.
PPAT holds social and educational events for families to have fun while also learning about the best ways to support pediatric IBD patients. The group was recently awarded a $5,000 grant from ImproveCareNow’s inaugural Patient and Parent Innovation Fund to formalize its group model and produce a manual about creating a patient and parent advisory team.
ICN is a collaborative, international community of more than 100 IBD clinical centers and programs, which shares data and other information to pursue best practices and results for IBD patients with a focus on remission. For information on upcoming PPAT activities, send an email to IBDMGHPARENTS@gmail.com or a tweet to Jill @jmmh123.
Liam is also planning his next IBD fundraiser for Crohn’s disease in the spring. Visit https://because.massgeneral.org/fundraiser/1108217 to learn more.