Prior to Chad Carr’s diagnosis, I had never even heard of Diffuse Intrinsic Pontine Glioma, or DIPG. In fact, every DIPG parent I’ve spoken to said they had never heard of it either.
That, my friends, is the problem.
Not because we should make a point of looking up rare diseases so we are never caught off guard, but because we need to pay attention when we are finally told about one.
“The system” has let down children with DIPG. This disease has been killing for decades and nothing has been done about it because no one has had the voice to force the public to pay attention.
Enter Lauren Hill and Chad Carr.
A True Hero
Lauren Hill captured the hearts of sports fans everywhere when she opened up about her DIPG diagnosis in 2014. She was diagnosed as a senior in high school, just 48 days after committing to play basketball at Division III Mount St. Joseph University. To say Lauren Hill was a hero would be a gross understatement.
“I know that this is a disease that mostly affects little kids,” she told Jim Rome in October of 2014. “I’m old enough to express my symptoms and talk to the doctors clearly about what’s happening to me and what’s going through my mind. Kids don’t have the words or the ability to articulate what’s happening to them. So I need to be the voice for little ones.”
Hill’s determination to raise money (she raised more than $1.5 million) and awareness for DIPG made a lasting impact on the country’s understanding of the disease. Still, it hasn’t been enough. While many remember Hill’s impact, they may not remember that it was DIPG that took her life.
“Lauren Hill spent her final year polishing a layup and inspiring others to live fully,” read the lede of an ESPN article published the day she died. “She succeeded at both as she fought an inoperable brain tumor.”
An inoperable brain tumor. Not Diffuse Intrinsic Pontine Glioma. The tumor was never named in the article.
That is a problem.
Ann Arbor’s Sweet Boy
As Hill made national news with her story that Mount St. Joseph would move up it’s opening game so she could play, the Carr family was reeling from the news that young Chad was diagnosed with DIPG on September 23, 2014, just three days shy of his fourth birthday.
“This is Chad,” wrote Tammi on her Facebook page. “My precocious, beautiful smart soon to be 4 year old. Yesterday our lives changed as he was diagnosed with an inoperative brain tumor in his brain stem. We now need prayers and its my hope that this goes viral and millions fall in love with my little man and send him prayers. It’s going to take a miracle and I believe it can happen and I hope you will help and spread his story!!”
The story went viral within days. The Ann Arbor and Saline communities rallied around the family, and Tammi continued to share Chad’s story through Facebook.
“To post something on Facebook and have it take off the way it has (means) there’s a plan here. I put one post up,” Tammi told MLive two months later.
“It’s weird. One week we’re living our lives and the next week it’s you getting this support from just amazing places. People like Charles Woodson and others who have been friends over the years, that’s their way of showing support.
“But the outpouring from Texas A&M, Georgia Tech, getting things in the mail, the Sabres, the Maple Leafs, it’s awesome. It’s really awesome.”
Now You Are Part of the Story
Lauren Hill and Chad Carr have become the faces of DIPG, but there are so many other precious children and families who have been affected. I have been tasked with the very important job of giving those children a voice through the conduit of The ChadTough Foundation.
You have a job, too. It is your job to give this disease a louder voice by spreading the word that it exists and that it needs a cure.
“I remember thinking to myself, OK, what are they going to do?” Hill told The Jim Rome Show in 2014. “I expected them to have some kind of plan and that’s what I was waiting to hear because I just wanted to get back on the court. I wanted to keep playing that year. I didn’t want to stop.”
There was no plan.
It’s the feeling so many parents experience when they are told their child has DIPG.
Okay, what do we do now?
There isn’t anything to do. There aren’t any answers. It’s an end-of-the-road diagnosis and it has to change.
“If you look at other cancers as an example, you’ll see that the cancer dollars that flow (go) where people demand they go,” said Dr. Michelle Monje, a clinical researcher at Stanford who has devoted her career to DIPG. “People have demanded breast cancer research … and there’s been an enormous amount of breast cancer research funded by the government as a result.
“I think that as people are more aware of the importance of the (DIPG) research, they’re more willing to donate (and) to demand from their government representatives that funds be spent to understand this important pediatric cancer.”
Less than three months after Chad Carr gained his angel wings, The ChadTough Foundation has raised approximately $1 million that will go toward DIPG and pediatric brain tumor research.
Your voice is working. Now make sure you keep talking.