This cuts close to the bone…

It has been a while since I last wrote an article here, in fact, I have not had this much time between articles since I started to write down my thoughts about all that encompasses Jack’s Journey.  This is not, mind you, because there has been nothing happening. On the contrary actually.  But I write only when I am “moved to do so”.  It’s hard.  Trust me.  But I have been moved to write today like I have never been before.  

Many of you know the man in the photos is Drew Leathers.  Drew recently turned 28 and has been battling a form of NF called Schwannomatosis.  It is a rather severe form of NF (Jack has NF1) and can devastate the person that has it, in many cases the person dies from it.  Drew died today.  While we know he was born with Schwannomatosis my understanding is that the real battle started some 12 or so years ago and has been relentless ever since. Countless surgeries, pain medications, radiation and chemotherapy treatments, physical therapy, is what Drew and his family have endured because of this terrible disorder.  

Drew was one of my friends.  He was also one of my heroes.  It sucks to lose a friend AND a hero much less a son, brother, or nephew.  I am not going to claim any deep, deep friendship with Drew in the sense of how most friendships are defined. I am almost 20 years older and a lot less cooler than he ever was and lot less funnier too. He had a way of making you feel OK.  He owned the room he was in and not because of his wheelchair, in spite of it.  But we had a connection through the NF community but it was more than that to me. He was courageous in countelss ways.  I never had the courage to do most of what he already accomplished in his life, least of which was doing stand up comedy a few months back while in the throws of his battle.  Amazing really.

I watched Drew battle back under the love and guidance of his Mom, his brothers and his family many times.  Hundreds of people got to see him get up out of his wheelchair, a feat of magnificent proportions that I never thought would happen. I watched him and I learned.  I watched him hug Jack and Luke and it was great.  Kids tell you everything you need to know about somebody.  My kids loved Drew.  Drew was cool.  Beth and I will need to find the words to tell them soon.  

I watched as Cupids Undie Run grew and grew into what is now a national phenomenon that has raised close to $8M in 5 years for NF research.  He inspired all of us at CureNFwithJack to create our teams and it became a senssation within the phenomenon!  In 2 years CNFWJ and the runners on those teams raise $400,000 for research and promptly became one of the biggest fundraising mechanisms for Drew’s race.  

He showed me that I need to do more.  One of the last times we texted I told him I loved him and asked what I could do for him. “Just keep being there for your boys (and girl). It is my family that got me this far. And they will get me through this as well. Y’all just keep being badasses. Love y’all.”And so I have my directive from my hero who died today. You may read this and if you didn’t know him, you wish you had. Well, don’t worry you know him.

If you have lived life, you knew Drew.

If you have known laughter, you knew Drew

If you have known pain, you knew Drew

If you have known courage, you knew Drew

If you have known love, you knew Drew

If you have known struggles, you knew Drew

If you have known HOPE, you knew Drew

When I went to his “FUNeral” it was absolutely packed. I have never experienced anything quite like it before. I was not surprised, in fact nobody was except maybe Drew. Hundreds of people came to say goodbye the way he wanted it to happen. The line went on forever. People were grabbing a few moments of precious time. People I knew. People I didn’t know. Other “NF parents and families”. Community members, friends and family. It seemed like the entire Cupids Undie Run crew was there too. It was quite a tribute to him.

I was fortunate to share my moment with him. The last thing he said to me was not profound, in fact, in true Drew fashion it was more profane! And it was great. However, the second to last thing he said to me was “I love you, man. Keep doing what you’re doing.” So, I got that going for me which is nice. Peace to you Drew Leathers, your family and friends.

We will keep Cupids going.  People can sign up by clicking here and selecting Jack’s team in their town!  We will keep CureNFwithJack going and we will beat this Drew.  In your name.  

I love you.