Brooke Healey

1 Fact About DIPG That Will Spring You to Action

vote ChadTough

Vote each day for Coach Beilein and ChadTough at espn.com/infiniti.

It’s Day 4 of voting for the Infiniti Coaches Charity Challenge and it’s already felt like an eternity. Maybe it’s because I feel like I’ve learned an eternity’s worth of life lessons in a short three week’s time.

One of my roles within the challenge is to talk to families who have been impacted by DIPG. Some of these families still have little fighters among them, but most of them have already had to say goodbye. What they all already have in common is that they’ve all endured the news that their child is going to die sooner, not later.

The pieces of their stories are so similar, I can almost close my eyes and envision them. The scary wait for test results. Noticing the doctors can’t look you in the eye. Getting the official diagnosis and the devastating fact that treatment for your child’s disease hasn’t progressed in four decades. Having it sink in that your child has just been delivered a death sentence.

The anger. The loneliness. The isolation.

Jack's Angels

Learn more about Jack’s story at jacksangelsfoundation.com/

One mother described the moments that followed her three-year-old son’s diagnosis so vividly. She took him to a playground outside the hospital to let him run around for a bit. He tried, but the effects of the brain tumor were already setting in. His body wouldn’t do what it was told, resulting in jerky movements that not only prevented his play, it scared the other kids. Her heart broke as she watched her little boy want to be like all the other kids, realizing he would never be like all the other kids again.

It’s hard to imagine the pain.

It’s that pain that places so much importance on this contest, not only for the money that could go toward pediatric brain tumor research, but for the exposure this disease needs. These children don’t have a voice. It’s something I’ve heard Tammi Carr say a number of times, but I’m only just now starting to grasp what that really means.

The thing is, statistics are what is driving research dollars, but statistics don’t tell the whole story. Statistics are not human lives. Statistics are not a parent receiving the news that they will have to watch their child suffer and then succumb to death. Statistics don’t paint the picture of what it feels like to have the whole world move on while you have to watch your child deteriorate and then leave you.

To do nothing as that happens to parent after parent after parent is just not right. It’s time to do something, and taking the time to vote each day for Coach John Beilein and The ChadTough Foundation is a small gesture that could make a big change. Brilliant minds are ready and willing to find this cure, but they need the funds to do so.

In talking with one mother about DIPG and the loss of her son, I asked her what she believed to be the biggest misconception about the disease. I expected her to talk about the benefits a cure would have on pediatric brain tumors and cancers as a whole, negating the belief that researching a rare disease would only help a small number of lives. I expected her to talk about the lack of funds dedicated to childhood cancers, negating the belief that sick children are a top priority in our country.

Brooke Healey

Learn more about Brooke’s story at brookehealey.com

I expected her to talk about brain tumors as the leading cause of cancer deaths among children, negating the belief that this isn’t a huge problem to be addressed.

But she didn’t. What she did say caught me completely off guard. What, I asked, is the biggest misconception the public has about this horrific disease?

“It could never happen to me or my child.”

Think about it. That word – “rare” – can lull you into believing that you and your children are untouchable, but the truth is, you aren’t. It could happen to you. It could happen to your niece, your grandchild, your godson, your friend’s child.

It could happen to any of us.

So, as you read about these children suffering from this “rare” disease, put yourself in the shoes of their parents, grandparents, siblings, friends, and muster up the anger you would feel if you were met with the devastating fact that treatment for your child’s disease hasn’t progressed in four decades.

Then set a reminder on your phone and vote each day for Coach Beilein and The ChadTough Foundation. Your vote may end up being a small part of a big change.

6 thoughts on “1 Fact About DIPG That Will Spring You to Action

  1. Lori Baker says:

    This just breaks my heart……
    I had never heard of this terrible child’s cancer. I have worked in medical field over 40 years, 10 at St Joe in Ann Arbor. I have followed and cried with #ChadTough and am a supporter. Thank you to everyone on this journey, it does take a village…….

  2. Julie says:

    As a parent of a child who was tortured and killed by DIPG, I can say that being told on the day of diagnosis that my child was terminal, and had 9 to 12 months to live, I never imagined this could happen to us. This is the kind of illness that only happens to others.
    DIPG is 100% fatal and before it takes the child’s life, it takes all else first. Bit by bit. Killing him slowly, painfully.
    Please vote and remind your friends to do the same. Funding is very limited and we need more research to help the next families.

  3. Deanna Dusseau-Garno says:

    I have a five year son with blond hair and big brown eyes. I believe he is one of the reasons I am so drawn to Chad Carr and his story. I lost a child almost 16 years ago, she was stillborn. I didn’t think something like that would happen to me either. It scares me to death that this could be my little boy. It breaks my heart for the Carr family. I want to help, just as I would hope that people would help me.

  4. Jenny Wonnocott says:

    My neices so Braiden was diagnosed with DIPG in early May last year it has broken all our heart’s he is a little fighter and apart from a droopy eye and speech problems are his symtoms at present for how much longer it’s not certain. An MRI in November confirmed his Tumour to have grown 2mm since August a month after radiation treatment was completed. They were astounded from what I hear my neice relay from hospital comments. It supposedly was expected he would have had most of his symptoms back and much closer to death again. We are a large family and have been trying to keep his diet as clean as possible and taken out sugar nearly all together. Its been hard as he has cousins who live with him and visit and now and then he eats something he’s not supposed to his parent’shave upped him on childrens probiotics, multivitamins etc and of course his cleanwr diet involves fresh food less red meat. Just ob research basically what his diet whould have been. Now ithe family are just waiting for the inevitable which is to unbearable to even contemplate. Our hearts are broken. And even worse for his Mum and Dad of course. And all we have is hope and luckily support amongst ourselves within the family and our friends, this has helped us stay strong. But like others with no cure our world is about to crumble.

Leave a Reply