Did you go to Castle High School?
Did you go to Indiana University?
Do you have an awesome friend who continues to plow through challenges and help others in the process?
If you answered yes to any of the above, READ THIS. If you answered no to any of the above, READ THIS.
Soooooo…..basically you should read this.
I’ve been saturated with great friends. Amazing people have surrounded me from preschool to college, from my childhood neighborhood to church, extracurricular events to mom groups. I say this from a place of complete undeserved blessing versus bragging. I’ve done zilch to earn these people but will happily keep this amazing little support system all around me as long as I can. I have been gifted with really amazing friends.
Let me go a bit further and say there are a small handful of people that stand out even among that high caliber group. Matt Hay is one of these ‘outstanders.’
I met Matt in the summer of 1986 at church camp in Santa Claus, Indiana.
(For those of you who are from a state other than Indiana….yes, there is actually a town called Santa Claus. It’s home to Holiday World, a nationally renowned theme park and it. is. awesome.)
When I spotted Matt, two things stood out- his bright white head of hair and his infectious grin. He was super cool. Rad. Everything an awesome boy in the 80’s should be. Camp only lasted a week but as luck would have it, I would be in classes with Matt from that point forward. From elementary and junior high school on to good old Castle High School. He became one of my best guy friends and there was a level of comfort in knowing he would also be attending Indiana University. We ended up in the business school together, majoring in the same subject.
I was like bubble gum on his shoe….hard to get rid of.
Matt was the kind of friend who, during the Emily Dating Drought, would set me up with his trustworthy fraternity brothers so I wouldn’t have to ask a cousin to be my date. He is the friend who was/is ALWAYS good for a laugh. I can count on him for genuine, honest truth and counsel even though we’re both now raising our own respective blonde-headed kiddos.
In 1998, while we were still at Indiana University, Matt began experiencing hearing loss. He was eventually diagnosed with a condition called Neurofibromatosis. Most individuals with NF are diagnosed earlier in life but Matt has always been an overachiever. However, he did just fess up recently that he missed our intensive final project for business school due to the timing of his first brain surgery.
If, like me, you are unfamiliar with this condition upon first hearing/reading about it, the Children’s Tumor Foundation has provided some excellent information here.
From their site, “Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.”
Neurofibromatosis 1 (NF1) occurs in roughly 1 in every 4,000 people. However, Matt has NF2 which occurs in 1 in every 25,000.
It’s a high stakes lottery he didn’t enter to win.
Since his diagnosis, he has lost his hearing as well as some balance. He is completely deaf without the help of his ABI- auditory brain implant. Neither factor has stopped him from participating in countless races and triathlons. And despite these losses, he never lost his sense of humor. EVER.
With the help of a recumbent bike, necessary for balance, he completed an Ironman in 2011. He tells a story about Nora, his wife, who was present to cheer him on. He jokes that he had removed his ABI, due to the swimming portion of the race, and didn’t realize the volume at which he was speaking. He quickly realized people were wondering why he was screaming at this nice young woman as she was clearly just trying to cheer him on.
Employed full time in a marketing position. Happily married. Father to three beautiful kids. Deaf. Balance not quite on par with Simone Biles. Still found time and energy to train and compete in an Ironman competition.
Huh, maybe I can get it together to do that 5k after all….
Matt has undergone several operations and countless MRIs. His list of challenges has increased since his initial diagnosis. He has to worry about and deal with things to which most 39 year olds wouldn’t give a second thought. Yet he doesn’t let his diagnosis define him.
At least not in the way one might expect.
He has become an active participant in the fight for NF research advancements. He is an avid fundraiser. He serves on the board for Children’s Tumor Foundation.
I told you he was rad.
His example of perseverance and positive attitude in the face of trials has been a constant, uplifting gift to me for nearly 20 years. I consider myself fortunate to be in his circle of friends.
In true Matt fashion, he is now involved with a Chicago organization that pairs able bodied athletes with other athletes who need assistance due to a variety of conditions or disabilities. He has quietly been assisting other disabled athletes compete in and complete their own races.Matt has been also been competing in athletic events to raise money for NF research for 15 years. It’s estimated his fundraising alone has raised $100,000 for the cause. Which is precisely why I’m sharing my ‘Matt Facts’ with you today. This weekend marks the start of another race and another opportunity to raise funds for Chidren’s Tumor Foundation.
No doubt you have many people and ‘things’ vying for your precious dollars. I know I’ve mentioned more than once the 47,000 glue sticks necessary for this year’s school bags, so I feel your pain.
BUT, I promise you won’t find too many ways to share your money that will feel as good as helping to research a way to end a condition that negatively impacts so many children and their families.
Please consider giving to Children’s Tumor Foundation. As many of you know, research in pediatric areas typically gets significantly less funding than its adult counterparts. You can help Matt as he works to raise awareness and money. His personal goal is now $7,500 and I know we can get him over his mark before his race. The link below has information about how to donate.
CLICK HERE to help Team Hay raise funds for Children’s Tumor Foundation!
If you’re from Southern Indiana, if you attended Indiana University, if you ever had a friend who saved you from going stag to a dance, if you care about pediatric research, if you ever watched an Ironman race on TV while finishing off a pint of Ben and Jerry’s, if you have a friend, if you’d like a friend, if you want to be a friend……..donate for Matt and all the others impacted by NF.And for Matt, who will be racing this weekend with his wife, I have two pieces of advice:
- Don’t scream at Nora