Stacy Dylan: This mom is rockin’ the cause for Crohn’s Disease
A couple of years after her son Lowell was born, he was having severe stomach pains, and Stacy Dylan knew it might be serious.
She found out Lowell has Crohn’s disease, a chronic inflammatory condition of the gastrointestinal tract that’s especially likely to affect Ashkenazi Jews.
Lowell is now 14, and taking care of him, her younger of her two children, is “a full-time job and more,” Dylan said. His care requires special diets and monitoring, along with “dealing with tutors, doctors, specialists, massage therapists, hypnotherapists. I’m basically a case manager, mom and a cook.”
Dylan, now 47, has immersed herself not only in caring for Lowell, but also in helping others with the condition. In 2010, she entered her first half-marathon to help raise money for the Crohn’s & Colitis Foundation of America. While training, she met Dana Zatulove, whose son Brian had been diagnosed with ulcerative colitis — a condition that causes swelling in the lining of the large intestine — when he was 8. Together, in 2012, the two mothers co-founded the nonprofit Connecting to Cure Crohn’s and Colitis.
About 1.6 million Americans suffer from Crohn’s disease or ulcerative colitis. Current research is looking at how genes may influence the intestinal bacteria that triggers inflammatory bowel diseases. Although they’re not considered fatal, some people do die from the diseases.
“The two main reasons we started the charity were to promote awareness and reach a different demographic than other organizations related to Crohn’s and colitis do, and to raise money for research,” Dylan said.
In February 2013, Lowell underwent a surgical procedure that led to a perforated bowel and emergency surgery. Because of complications, he needed a PICC line (peripherally inserted central catheter — a catheter inserted in a peripheral vein in the arm) for a year to feed him intravenously.
That led to dramatic weight loss and time away from school, his mother said. “There’s a lot of medication to treat Crohn’s and colitis. We started with the one with the least side effects. We’ve been on every single medication, and either they don’t work, or work for a little while, or have too many side effects,” she said.
Lowell is currently trying a new medication, and the family is waiting to see whether it’s effective. There’s an emotional toll from all this, which is why Dylan is so committed to raising money for research.
Dylan and Zatulove also have distinguished themselves with fundraisers different from typical ones — their next rock benefit show will be in April at the Troubadour in West Hollywood, and, for the fourth year in a row, the headliner will be Jakob Dylan, lead singer and songwriter for The Wallflowers. Jakob’s brother is Stacy’s husband (and Lowell’s dad), Samuel Dylan, and both are the sons of Stacy’s father-in-law, Bob Dylan.
“When she talks about Crohn’s and colitis, or her nonprofit, her passion comes out,” said Lesley Bloom, admission director at Pressman Academy at Temple Beth Am, and a board member of Connecting to Cure Crohn’s and Colitis. “Her face lights up. I don’t know how she does it, but she absorbs all this information regarding the diseases, and puts it together and makes you believe that every penny you give helps the cause.”
All three of Bloom’s children have been diagnosed with Crohn’s, and the two families’ boys play baseball together at Cheviot Hills Park. “We’re friends, but we have a bond because our children suffer from chronic illness,” Bloom said. “And you’ll do anything to help them. You can’t take it away from your children or child, so raising money makes you feel like you’re doing something to help.”
Dylan’s nonprofit is looking to build a peer-to-peer network, to connect parents who’ve been dealing with inflammatory bowel diseases for years to those whose kids are newly diagnosed. The plan is to expand her small, informal support group of Los Angeles-area parents.
Another goal is to raise awareness of how such diseases affect all family members. “My brother was born with a birth defect, hydrocephalus [a buildup of fluid inside the skull that leads to brain swelling.] I was the sibling who didn’t get a lot of attention. I was fine; I didn’t need it,” Dylan said. But, she said, she’s aware of the needs of her oldest son, Jonah, who is 17. “I try to be sensitive to not having him feel left out, and I went to help other families navigate that,” she said.
Her own background includes working as a marriage and family therapist, which helps with her nonprofit work, she said. “I feel really strongly about patient advocacy, because I’ve have had a lot of experience dealing with doctors and schools and insurance companies. It’s a difficult situation when you’re trying to deal with all these people as well as with your sick child, and they don’t understand,” Dylan said. “It’s important to share your experience and tell your story.”