Being a first time mom, I worried about a lot of things and wondered if every little cold was something more serious. Though one thing I never worried about was my daughter getting cancer. That was something that happened to children in far away make believe places. But that worry smacked me in the face when the life I knew shattered with the words “It’s a brain tumor.”
We visited the doctor that day because I thought Ava, my four year old daughter, had an ear infection but that turned into the worst cancer diagnosis a child can have, diffused intrinsic pontine glioma or DIPG. I remember the doctor who told us about DIPG said not to google it. I know now that is because the facts are grim and depressing.
– There is no treatment that will cure DIPG.
– No child has ever survived this diagnosis.
– Children with DIPG live on average, 9-12 months after diagnosis.
– DIPG causes them to lose all motor functions like walking, speaking and swallowing; all while the child is aware what is happening to their failing body.
After facing these depressing facts, my whole family was beyond devastated. How do we instill hope in our child that she will beat this monster if no one before her ever has?
We decided we would fight as best we could. We enrolled her in a clinical trial and fought alongside her for 11 months. We wanted to make it all better for her but because of lack of research, sadly there was nothing we could do. She grew weaker and weaker while the cancer overtook her small body.
Ava passed away when she was only five years old. Since her death, I have watched more children die of this horrific brain cancer and with each child’s death, I grow angry. Angry that this cancer might have a cure if only researchers had the funding. Angry that people aren’t aware of this beast that is robbing families of a life with their child. Angry that they too cannot save their tiny little fighter.
That anger is what fuels me in continuing to fight for Ava and the 200 or more children that will receive the same diagnosis this year. One child dying from DIPG is too many. They need a cure! Are you angry too?
Please help us fund this much needed research TODAY, so there might be a cure TOMORROW. Make a donation to The Gold Hope Project research fund here.
Thank you in advance for your support!
Fighting until we find a cure,
Co-Founder and President of The Gold Hope Project