Let Freedom Ring

Mel Gibson's movie Braveheart tells a story of a man whose greatest wish is freedom - freedom from a political system which has held in its grasp the lives and spirit of an entire country. One of the most memorable lines in the movie is William Wallace's last word - "Freedom!"

The United States was founded for that same purpose - freedom from inequality and lives free to worship as we choose. As a nation, we have fought to ensure that right.

Some of our children are facing a different battle, however, and on Independece Day three were freed from the disease which tried to break their spirits. Caleb Crosby, Kelly-Anne Bouchard and Max Lacewell have been released. They joined Morgan Pritchett and Kira Cundiff, who passed only days before and helped to welcome Zac Talley on the 8th.

These families have just suffered one of the worst losses unimaginable in a parent's life and the entire dipg community grieves with them.

I Hate This Disease

Everytime I read of another child who has been diagnosed with dipg, or see a picture of another child who has to rely on steroids for relief from swelling or hear of one more family who will no longer be able to tuck their child in at night, touching their cheek, stroking their hair, giving one more kiss before entrusting each precious gift to angels for safekeeping during the night - I hate.

"I hate..." is a phrase we try not to use - it's ugly. I seem to reserve it for steroids and dipg.

I hate what diffuse intrinsic pontine glioma does to children, robbing them of so much that is child. Running thru sprinklers, riding a bike, coloring, saying "I love you". I hate what it does to families, robbing them of a precious child. Stealing away a lifetime and changing countless others.

Liam, Tanea, Luke, CJ and just hours ago, Sadie - they have left behind them parents, brothers, sisters, family, friends, a world now less because they are gone, but so much better for them having been here at all.