This is 16-year old David’s story as told by his mother Amanda.
“When my son was first diagnosed with a GBM, we were scared but determined to fight. We started searching for answers on the internet right away, and as you can imagine, we found a lot of bad information along with a lot of good information. It was hard to tell what was good advice and what was just a shot in the dark. Luckily, we quickly found the Chris Elliott Fund and touched base with Dellann. She returned my call quickly and gave me the “short list” of what to do and what to ask. The most important thing I learned in that conversation was to ask about genetic testing. No one had mentioned that to us at the hospital, and in fact, they didn’t seem to give it much credence at all.
We kept pushing for the genetic testing, and the hospital seemed to take quite a while to return the results. More than a couple of months later, when we finally did get the results from the hospital, we learned that their recommended treatment path of Temodar would have most likely been of no use. My son’s genetic markers showed that he was in the group that Temodar has little to no positive effect on.
We chose a different path of treatment for him, and I believe that made a world of difference. I’m so thankful for the quick response of the Chris Elliott Fund in our moment of need. We aren’t done fighting this battle, but it is comforting knowing that we have partners like them in the fight.
I hope this helps everyone who reads this. We really are so appreciative of the solid advice you have provided. I wish, hope, and pray for a cure every day, but in the meanwhile we will fight this thing the hard way. It is vital that people gift to the Chris Elliott Fund so that they can hire another Health Information Specialist so that they can continue to do the great work that they so and provide their services to those in need free. ”