The diagnosis came back, and Ross and Mindy Deutsch, still reeling from that last 40 hours or so, knew their 6-year old son, Rory, had terminal cancer. He had a brain stem glioma.

Rory, an active and vibrant youngster in 1998, had just completed a tennis camp, but told his dad how his arm was hurting. At first, Ross simply associated it with the rigors of Rory’s recent athletic program.

The next day, Ross came home from work and Rory was eager to get up on his lap to be at the computer, but as Rory rose up his right hand to grab the mouse…his arm simply didn’t work.

And then it was his left wrist that failed him and when he tried to curl his fingers into a fist, he couldn’t. In fact, his wrist wouldn’t move unless he raised up his arm.

The ensuing tests confirmed his terminal brain cancer with no hope for treatment, even as the best doctors and specialists were on it.

The idea that their son would soon die left Ross and Mindy inconsolable; in fact, as a sign of their pulling inward with grief, they quit taking phone calls for some time.

Then, out of the blue, Ross answered a call while sitting by Rory’s bedside at home: That call became the catalyst for Ross and Mindy to choose.

Duke basketball Coach Mike Krzyzewski  the caller on the other end of the line, told the Deutches to move beyond the definition of the disease and to not let it “define” how they were going to handle the future.

It happened quickly, very quickly, and the vision to do something for Rory took hold. The brain cancer foundation — the Rory David Deutsch Foundation — was born with the mission of eradicating pediatric brain stem gliomas.

Today, the foundation has raised close to $7 million in funding pediatric cancer research and programs aimed at an array of childhood diseases, as well as bringing support to cancer-care families. As Ross recently noted, “Rory’s name will forever live on through these research programs.”

Contact us to learn more about the endowed programs at the Lurie Children’s Hospital of Chicago and the Preston Robert Tisch Brain Tumor Center at Duke University in North Carolina.

 

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