2015 #MyGivingStory Award Winner

By Jenny Mosier

It was the week after my son turned six years old and also started kindergarten that we knew something was wrong. My son, Michael, had always been a healthy, energetic little boy who loved sports and learning. On August 25, 2014, he boarded the bus for his first day of kindergarten, and he turned six years old just two days later. Life was really good, and with Michael's little sister Lila (then 2.5 years old), our family felt happy and complete. Suddenly, at the end of that week, Michael began complaining of double vision. We would learn on September 4, 2014, that he had an inoperable pediatric brain tumor called DIPG (diffuse intrinsic pontine glioma), with a median survival of nine months from diagnosis and essentially a zero percent survival. With hopes that he would be the miracle, he underwent 30 radiation treatments, followed by chemotherapy, but unfortunately Michael continued to deteriorate. On August 24, Michael had been jumping across trampolines with his friends for his birthday party, and just weeks later, he had lost the ability to walk on his own and relied on a wheelchair. Over a period of months, his body weight doubled due to the steroids necessary to reduce the inflammation his brain. He lost the functioning of the left side of his body, and over time he would also be unable to speak, chew, swallow, and then finally breathe. Michael passed away just 8.5 months later on May 17, 2015.

His story is tragic, but also, unfortunately, representative of what kids facing DIPG have to confront. The way that my son approached his illness, however, was anything but ordinary. While his body failed him bit-by-bit every single day, his mind remained intact, and he fought with every ounce of his being. Michael continued to go to school whenever possible, and he met each day with determination. Michael became known for his checklists. Each morning, he sat down with his father and wrote a list of everything he would accomplish that day, and despite his exhaustion from the treatments he endured, he would not go to sleep unless the list was completed. He inspired thousands across the world -- from more than 60 countries -- to donate money for pediatric brain cancer research, resulting in him earning the award as the top fundraiser in one of the largest brain cancer events in the country. Michael is without a doubt the strongest person I have known.

I give to Michael Mosier Defeat DIPG Foundation, www.defeatdipg.org, not just to honor my son -- though of course, that is a part of it -- but to carry on the fight that he began. I give because hundreds of children each year are diagnosed with DIPG, and they deserve HOPE. They deserve people fighting for them, and that is now what I do every day. Our family has given and will always give financially, and I have also resigned from my job as a lawyer to dedicate myself full time to this cause. We will fight to find a cure to DIPG because we want the next family sitting in a waiting room with their normally healthy child -- who finds out they have DIPG -- to have options to save their child's life. We will complete the final item on Michael's checklist: Defeat DIPG.

Written in support of Michael Mosier Defeat DIPG Foundation