Our daughter Sarah began talking before her first birthday and, once she started, she rarely stopped. Then, about six weeks before her death, a DIPG brain tumor made her unable to move her mouth and tongue. Even as she approached the end of her life at nine years old, Sarah held on to her sense of humor. One evening in her final week, her father and I were transferring her from her hospital bed to our bed for the night. Sarah couldn’t move any part of her body except her right hand, so we used a sheet underneath her to lift her onto the big bed. As we settled her down, she passed gas. In our life before DIPG, that would have caused giggles and a funny follow up. But our lively girl was silent and tired. I didn’t say anything, waiting to see if Sarah had the energy to respond, wondering if she was still with us.  I saw her ribcage heave up and down several times and I knew she was laughing, still finding the essential humor in farting on your parents. Humor helped us immensely during the ordeal of Sarah’s illness. Sarah’s humor was simple and silly. It eased the tension and brought us together, sharing smiles and laughter.

Sarah lived with DIPG slightly longer than average and suffered relatively few painful symptoms. However, in the first two months after diagnosis, she lost much of the use of her left side. Witnessing our active, energetic girl became unable to walk on her own was traumatic, but we had to adapt quickly and stay positive. With support of family and friends, Sarah was able to travel extensively and have extraordinary experiences that filled her last year with great meaning and much love.

We lived through 17 months of Sarah’s illness knowing that we would lose our only child eventually, as DIPG is currently terminal at diagnosis. Before DIPG, we had what seemed like normal assumptions about life as parents. We did not realize that it was an illusion to believe we could keep her healthy and would see her grow up.

Sarah’s death was devastating, despite the love and support we received before and after. We have been actively working to create new hope and positive meaning in our lives. Our inspiration is Sarah’s enduring joy and humor in the face of the most difficult challenges.

Helping others is also a central aspect of our lives now. We met Jenny Mosier just after Sarah died and knew that we wanted to work to make a difference in the future of treating DIPG. Being a Defeat DIPG Partner Family will help us keep saying Sarah’s name and telling her story. We want all the children lost to DIPG to be remembered. But more importantly, we want to facilitate action to understand and outsmart DIPG. The love we have for our children connects all the families in the Defeat DIPG Network and inspires us as we work to see the day when DIPG is a treatable disease. In honor of the children you love, please join the fight to defeat DIPG.