From Isolation to Advocacy

How One Richmond Mom Found Strength and Support for Her Daughter with Better2gether and Courageous Parents Network

Richmond mom, Emily, and her husband Caison never imagined that their 8-year-old daughter, Chloe, would face a life-threatening disease. Chloe was always an active and busy child who enjoyed competitive cheerleading.

Then, unexpectedly, Chloe was diagnosed with a rare and complex disease. “During that time, I felt very isolated,” shares Emily. “Although Chloe’s disease requires treatment by an oncologist, the cancer-related support groups, camps, and programs didn’t apply.” Emily had wondered, “What was there for me and my family?”

Through a friend at Church, Emily learned about Better2gether and immediately got involved. She began participating in the Moments Support Group where she felt like she could connect with a community of caregivers on a similar journey. In addition, Emily joined the Courageous Parents Network, a national organization that supports families with children receiving pediatric palliative care.

But seeking information and support for herself and her family wasn’t Emily’s only goal. Emily applied and was selected to serve as a Courageous Parents Network Parent Champion. She sought this opportunity so she could help advocate for parents who feel alone on this journey, and to be a voice for children like Chloe, who experience multiple medical appointments and therapies.

“There are so many misconceptions about palliative care and what it entails,” Emily explains. “I became interested in the advocacy piece and became a Parent Champion for CPN. I also decided that if there is even one more person sitting in the Richmond area who is feeling isolated and overwhelmed by their child’s diagnosis, I wanted to help locally.”

Emily then reached out to Carissa Henry, Resource Coordinator at Better2gether, and asked if she could share information about the Courageous Parents Network at an upcoming Moments Support Group.

Shortly after her presentation, Emily learned that a parent was inspired to seek palliative care for their own child. “Just knowing that something I said – some information I shared – might have made a difference. That was so rewarding.”

“Our lives were completely turned upside down when Chloe was diagnosed,” Emily shares. “It’s been so hard, but it’s meant so much to be able to connect with other families who understand.”

Chloe, now 12, has been battling her disease for four years. Emily describes her daughter as “magnetic” and “effervescent.” “Chloe is brave. She has inspired her community and us. And she tries to find the joy where she can every day,” shares Emily.

Emily and her family are grateful they found their way to Better2gether. She is especially appreciative of Carissa Henry, Resource Coordinator. “Carissa is someone who’s inspired me,” Emily says. “She continually checks on me. She asks, ‘How are things? Is there anything I can do?’ I’ve been involved with other foundations and organizations, and I’ve never had anyone check on me as a mom.”