The third Pediatric Pain Warriors weekend retreat, held Nov. 15-17 at the Great Wolf Lodge in Gurnee, IL, was the biggest event yet. Approximately 75 kids with pain and their loved ones—more than 200 people total—traveled from all across the country to take part.
Thanks to the generosity of numerous sponsors, including Johnson & Johnson, Genentech, Thrive Tape, Cure Medical, Papa & Barkley, The Greenbrier Companies, and the New York Yankees, as well as individual donors, the event is free to attend with some families receiving scholarships to help offset the cost of travel.
“It was so powerful to be around other families experiencing the same struggles as us, to share resources and support,” says Maya Greenberg, who attended with her daughter, who lives with Ehlers-Danlos syndrome and other conditions. “The speakers were top-notch, providing targeted information about our exact need areas. To be able to have this experience for free, in a year where we are drowning in medical bills, was such a boon. And the venue was absolutely kid-heaven.”
Attendees were greeted on arrival with gift bags, featuring items donated from many of the presenting sponsors. The weekend officially kicked off Friday evening with a welcome dinner and icebreaker activities—including dancing and games. Attendees also had the chance to try kinesiology tape with the help of a certified physical therapist, courtesy of sponsor Thrive Tape.
[su_pullquote align=”right”]Check out a slideshow here.[/su_pullquote]
On Saturday, parents and caregivers participated in a day-long educational program packed full of information relevant to helping their kids live their best lives despite pain. One of the highlights was a talk from Andrea Dalzell, RN, a motivational speaker who uses a wheelchair in her career as a nurse. Dalzell’s visit was sponsored by Cure Medical.
Other speakers included:
- Pradeep Chopra, MD, a renowned pediatric pain specialist;
- Reagan Potter, a pediatric pain warrior who spoke about the benefits of service dogs;
- Michael Shapiro-Barr, of Backpack Health, who discussed the app’s registry and streamlined medical record features;
- Margot Anderson, MSW, a social worker who discussed school accommodations;
- Shamin Ladhnai, PsyD, a pain psychologist with Ascension All Saints Hospital; and
- Stephanie Tarlowski, of Papa & Barkley, who talked about the benefits of CBD.
In addition to educating parents, Potter and Dalzell also spoke with the pediatric pain warriors. The kids and their siblings spent Saturday doing fun activities, from arts and crafts to a pretend campfire circle, where they threw their worries into the imaginary flames.
At the end of the day, former Los Angeles Chargers linebacker Mike Moore stopped by to provide some words of encouragement—and hugs.
On Sunday, attendees had a chance to enjoy Great Wolf Lodge’s indoor waterpark. Parents could connect with one another and the kids could just be kids, despite their health struggles.
While education is a focus of the weekend retreats, for many attendees, the sense of support and community is the most important takeaway.
“Our family was able to connect and have fun, in ways that we typically are unable to, due to all the money and time spent on doctors and medicines and therapies,” says Nekea Mott, a mother of two children who live with chronic pain from various conditions, like chronic Lyme Disease and Ehlers-Danlos syndrome. “I cannot even express in words the magnitude of the impact of this weekend on our family, and the gratitude for your work and efforts to make this happen. Thank you, from the bottom of our hearts.”
To get information about the next retreat when it is announced, sign up for the pediatric email list and follow the Pediatric Pain Warrior Facebook page.