The Texas Children’s Pediatric Support Group in Houston, Texas, hosted its first meet and greet meeting to create a family-centered support network. Approximately 30 people attended the event, and there were many conversations about different tips and tricks that parents have found helpful. “As one of the planners of this event, it was particularly rewarding for me to see our patients connecting and learning from each other to realize they are not alone in this journey,” PHA support group leader Elise Whalen says.
The group welcomed a guest speaker, Shirley Craig, an individual who lives with PH. Shirley spoke about her diagnosis of a congenital heart lesion at age 25 and her PH journey through a lung transplant. It was helpful for parents to meet others on the same journey and to see that PH affects patients of all ages. The attendees ranged from infants to teenagers, along with parents. Kids enjoyed various activities, including bandana decorating, painting wooden hearts and using Play-Doh.
The group discussed its next meeting in October, which will focus on PH-101/basics, and hopefully a pumpkin-themed craft. The new support group hopes to have four meetings per year with a variety of themes: a central theme meet and greet, PH 101/basics, a transition-teen day meeting and an open theme.