MAHOPAC, N.Y. - Six years ago, doctors weren't sure Joy Degl would even survive. This September, the 6-year-old Mahopac youngster will be leading a parade.
Joy has been asked to serve as an ambassador for the 2018 Go the Distance Walk for Maria Fareri Children’s Hospital in Valhalla (part of Westchester Medical Center). The walk will be held Sunday, Sept. 16.
Joy was born on May 12, 2012, after her extremely premature birth at 23 weeks gestation, weighing just 1 pound and 4 ounces. But the doctors at Maria Fareri kept her alive and allowed her to thrive for 121 days in their neonatal intensive care unit (NICU), until she was able to come home. Joy’s mom, Jennifer Degl, a science teacher at Mahopac High School, said those doctors saved her life as well during the course of the pregnancy.
“Her [premature] birth was caused by my very serious high-risk pregnancy with a rare placental disorder called placenta percreta,” Degl said. “I almost lost my life four times during my extremely short pregnancy.”
Since then, Degl has become one of the biggest advocates for not just the hospital, but for premature babies, particularly micro-preemies such as Joy, by testifying before Congress, speaking before a national nursing convention, writing books and raising awareness, including taking part in the Go the Distance Walk every year.
“Our family created a team (Team From Hope to Joy) in honor of Joy and we’ve been walking at this event for five years,” Degl said. “Many members of our community, as well as family and friends, are right by our side to walk with us and donate money so that the future children in the hospital can have the best care possible. The money collected goes to not only care but also to provide the whole family with activities and services to make them feel at home during their hospital stay.”
In the wake of Joy’s birth and the experiences she and her daughter went through during that time, Degl wrote, “From Hope to Joy,” which has been a bestseller on Amazon. She recently released, “Stuck in Bed,” a book about pregnancy bed rest told from a child’s perspective.
But having Joy named an ambassador for the annual Go the Distance Walk might be the family’s best shining moment so far.
“She was really excited [when she found out],” Degl said of how her daughter reacted to the news. “She loves to perform. She takes dance lessons.”
Degl said Joy has some understanding of who she is and what she’s been through—at least as much as a 6-year-old can comprehend.
“She knows she was born too early and too small and spent a lot of time in the hospital,” Degl said. “She doesn’t know about how her chances for survival weren’t good other than she had to stay [at the hospital] so she could grow.”
Degl said she and her family (and sometimes her students) continue to fundraise for the hospital, collecting money and other items to support its myriad programs—especially for the NICU.
“We visit there often, especially when they have an event,” she said. “We donate books and blankets all the time. Sometimes the nurses and doctors will bring out parents who have [preemie] kids there to meet [Joy] so she can give them hope.”
Degl said Joy has been able to lead a relatively healthy life since her difficult start, but still suffers from lung issues.
“She has chronic lung disease—bronchial pulmonary dysplasia,” Degl said. “It makes her more vulnerable to things like colds; it can take her two to three weeks to get over one. Her lungs are 70 percent scar tissue, so she has difficulty expelling mucus. She’s had pneumonia eight times and that is what we have to look out for the most.”
Joy attends Hudson Valley Christian Academy in Mahopac, where the classroom sizes are smaller than the public school, thus limiting her exposure. A sashing ceremony to commemorate Joy’s ambassadorship was recently held at the school.
“She told the kids that the hospital doesn’t have to be such a scary place, which was cute,” Degl said.
Last year, Degl spoke before Congress in an effort to pass legislation that will incentivize pharmaceutical companies to produce more medication for premature babies. She said the legislation was going along fine, but the Congressional healthcare debate, centered around the fate of Obamacare and other issues, has slowed its progress somewhat.
“I do think [my testimony] has made a difference,” she said. “Every year they have reintroduced [the bill]. It got put on the back burner, but it’s gaining some traction now. It will offer incentives to pharmaceutical companies to introduce new drugs for preemies. There has not been a new drug since 1999. They just take drugs [designed] for older children and adults and reduce the dosage, which doesn’t really work. But they don’t like to invest time and money into research for such a small portion of the population.”
Degl now has a new business, Speaking for Moms and Babies, which offers her services as a guest speaker on the topic of premature babies and motherhood.
“It’s my passion and it seems to be needed, unfortunately,” she said.
Degl said the last six years, since the birth of Joy, have been life-changing for her and her family.
“It is amazing, but besides being lucky, it changes your whole life,” she said. “We had her and it changes you. You realize what families go through and that some babies never come home. This spreads awareness. You may not understand it and be less empathic, but if you do understand what [families of preemies] go through, it helps.
“We owe Joy’s life, and mine, too, to Westchester Medical Center and its children’s hospital and we are always trying to do our best to raise more money so that every family can be as blessed as we are. They saved my life and then saved Joy’s life. We will always be thankful to them,” she continued. “It was the most difficult thing we had ever experienced, and we will always walk with them to raise money.”
Degl encourages those who want to support the cause to come to the Go the Distance Walk this fall and join them. It’s a fun day of activities, characters, games, dance contests, bounce houses, food, face painting and more. To learn more, visit westchestermedicalcenter.com/go-the-distance-walk-and-family-fun-day.