A coach who became a friend who became an advocate

It is day 9 of NF Awareness month. As you may know, many kids with NF struggle with core strength issues and other side effects that make it relatively more difficult to play sports. About 6 or 7 years ago, we signed Jack up for baseball. Randomly, he was picked to play on a team and he liked it. His coach was a guy I didn't know at the time (despite being my neighbor), Marc Fein. Marc was terrific with the kids. Jack was not the best and was not the worst player. He was learning the game. He was having fun and Marc had put together a pretty decent team. Fast forward to the playoffs. Championship game. I know they are six but as we all know it can get pretty intense.

Jack's team was a run behind. Bases were loaded and there were 2 outs. It was Jack's turn to bat. Everyone wants to win. I get that. Marc coached to teach and because he is a good man. He is a former D-1 ballplayer himself. As I stood nervously by, watching Jack get ready to bat for the championship I was hoping he would walk or get a single or anything! If he made an out I would deal with that too, after all we had "bigger fish to fry". I was a terrible player by the way.

It's coach pitch, so Marc was on the mound. Parents, coaches, kids are all standing at this point. Not sure if Jack felt any tension as he walked up to the plate. Marc was ready to pitch to him. I was about to have a stroke. Anyway, just before he is ready to pitch, he comes off the mound and goes to the plate to have a word with Jack. He put one arm on his back and got down on one knee and said words that I will never know and returned to the mound. "Ok, Jack. Let's do this and have fun", he shouted from the mound. "OK", said Jack from home plate. I was biting my lower lip. I know, ridiculous. Pitch. Swing. Miss. Strike one. Crowd noise increased just a bit. Marc said, "just look at the ball". It got quiet.

This was before chemo and brain tumors and eye surgeries, although that surgery would be just around the corner. He was a regular kid, playing America's past time and it was straight out of Norman Rockwell but better. If I had the awareness at the time, I would have realized now that he was a winner no matter what. What I didn't know then is that NF makes that bat heavier for him. NF makes that ball harder to see and track and hit than others. NF can impact hand-eye coordination. Fact is, he was standing there with just his coach learning, championship be damned. He was amazing. Best of all he was in great hands. His pitcher was his coach. Marc is a Dad himself of some pretty amazing kids and an accomplished ball player in his own right. But right there in that moment it was just Jack and Marc having fun.

So, Marc readies himself and instructs Jack to do the same. Kids are anxiously waiting to hurry to the next base. They want to win. In what seemed like forever, the second pitch came. Pitch. Swing...

HIT!!!! RUN! RUN! Kid on third scores easily to tie the game. NF makes you run slower than most. Jack is no exception. He just needs to make it to first and beat the throw. I swear that day he was running with an anvil in his pants! Kid on second made it to third and the fielder was going for the play at first to get Jack. He threw it which sent the winning run toward home. Jack just needed to get to first before the throw!

Throw. Bounce. SAFE!!! Jack made it to first. Winning run scored. They won the championship. Everyone was happy and jumping around! Except for Marc. He was just standing there obviously happy. I watched him look at Jack and he was smiling and he went and high fived him. It was such a great moment.

Jack had the winning hit that scored two RBI's to win the championship. He "retired" from baseball.

Career paths took Marc and his family to Dallas where he would be working for NBC as a news anchor. We stayed in touch. He would stay up to date on Jack and was always concerned and supportive. One year he sent some autographed items for our golf auction. Just really great. Interestingly, the family that moved into the Fein house is the Codrington's. Duane Codrington would go on to film the iconic Jack's Journey video. Through the past few years, Marc has remained tied to Jack and our family and the battle to fight NF. A few years back he met a local Dallas child with NF and did a profile story on him and his family. He was raising awareness. His experience with Jack had left quite a mark. He wanted to make an impact.

A few weeks back I got a call from Marc and he told me about a baseball tournament he wants to host and use as a fundraiser and awareness raiser for NF. I was astounded but shouldn't have been. He decided that he could be impactful. Like most people, Marc is in the "unaffected pool". His children are healthy and none have NF and to my knowledge none of he or Nikki's family has NF. But you see, that's just it. This is how we are going to CureNFwithJack. It will happen because of people like Marc. It will happen because of people like you!

If this is not evidence of the kindness, humanity and much needed grace of people that we have had the good fortune to meet, I don' know what is.

When Marc reads this story it may be the first time he realizes the enormity of his deeds and actions that day. I wish I told him before now, but I hope he reads it today and realizes he is making a difference.

Tomorrow there is HOPE and you are among the reasons why.  Don't ever forget that fact. EVER

Jake, Beth, Jack, Luke and Grace 


PS Don't forget to sign up for the 6th Annual CureNFwithJack Golf Classic on June 6th! https://cnfwj6thannualgolf.planningpod.com/