A Memphis family is now receiving local care for their daughter’s rare genetic disease. BlueCross BlueShield of Tennessee will now cover Elle Gieselmann’s local infusions for the next year.
While her family battles their own struggles and grief, parents Dana and Frazer Gieselmann say they want to give back to the community that has, and continues, to provide much needed support.
“Early on we said, look, I’m not going anywhere. We’re going to get through this,” explains Frazer Gieselmann. His daughter Milla died in November from a form of Batten disease. The inherited neurodegenerative disorder currently has no cure.
The couple’s youngest daughter, Elle, was also diagnosed with the condition and has been receiving treatments of a newly FDA approved drug called Brineura. Gieselmann says as they mourn the loss of their middle child and walk through the struggles of Elle’s battle, loved ones and the community have continued to provide constant support. He explains, “you’re grieving the loss of her skills and you grieve what’s to come.”
For help, the Gieselmanns turned to the Kemmons Wilson Family Center for Good Grief. It’s Baptist Memorial Health Care’s first grief center. “They listen and meet you where you are,” says Frazer.
The family’s experience with the center has been so impactful that the Gieselmann’s wanted to get behind Baptist’s second location, in Midtown Memphis. The Kemmons Wilson Family Center for Good Grief, Milla’s House, honors the family’s late daughter with its name and is serving the expanding need for support.
“They are approaching this in a healthy way, head on. It’s not easy, but every day they make the commitment to be the best they can be that day,” says Angela Hamblen Kelly, the center’s executive director. She explains it’s about walking with people who have lost a loved one. The goal is to help them cope, not treat them. “We meet people where they are, and we start on their journey, and we let them lead us.”
At the center, professional therapists offer free one-on-one counsel for kids, teens and adults. Group space allows for educational sessions and discussion. “It’s counter-intuitive to go into the pain, but that’s really actually what helps heal us and helps us reconcile our grief into our lives,” says Kelly.
The Gieselmanns say they’ve gained both hope and support through their involvement. “There’s still great things happening and this house is a good example of Milla’s legacy moving forward and the grief center helps us to see that.”
In October, Baptist plans to open a third grief center location in Jonesboro, Arkansas. For more information about the grief programs at Baptist, and to find opportunities to support them, visit www.baptistonline.org.