When we received Elise’s diagnosis, we were given a sheet of paper with some information about AxD and told not to look up anything further online because it was too dire.
It’s not the doctors’ fault. That’s simply where the AxD community was just a few short years ago. But it wasn’t good enough for us. We knew we had to do something—whatever it might be.
After taking some time to process, we realized we had two things going for us. Two simple things that could power a movement. We had love—a crazy, deep, all-consuming love for our daughter. And we had hope—a hope that if we could start raising awareness and money, and directing them to the right places at the right time … that hope would get us closer to a cure.
That’s how love and hope became the foundation of Elise’s Corner.
At our very first fundraiser, we were able to bring together doctors from the research side and the clinical side of AxD, for the very first time. This laid a vital foundation for any future FDA approval and prospective treatments, as both sides need to walking in lock-step.
From there, love and hope has grown our community and developed a network of people—doctors, parents, patients, donors, and more.
The community is excited because we believe a clinical trial for a treatment is imminent. But our work won’t end with a treatment. A treatment is not a cure. And a cure is not ready, affordable access to that cure. The work of Elise’s Corner will continue until every goal is achieved.
When I look into Elise’s bright blue eyes, I’m always reminded of that love and hope. Elise’s Corner is not meant to be my daughter’s legacy. This is about her life. And the life of every child living with AxD. The lives they are living today, and the lives they will live well into the future because the love and hope that fuels our mission wills it to be.