NF Stories - Dr. Walker
As challenging as the work is, the resilience of individuals living with NF1 and their bravery inspires me to show up every day and push the boundaries of what we know.
NF Stories - Izzy
Dealing with NF is challenging, and it’s frustrating how many, including our medical community, often don’t know how to handle it. Watching Izzy face these challenges with such resilience is truly inspiring. I wish I could handle life as she does.
so, now i am giving a piece of myself to help find a cure?
I just stared at him, trying to quickly process what I just heard without crying. Thinking to myself in an instant, who is this kid? Who the hell is this incredible human? I was able to muster just two words. “Absolutely Jack.”
THE SPEECH
He’s done this before. I’ve lost count now in the past 10 years as to how many times exactly he has done this.
clark kent—the real hero
I think I have always been a “Clark Kent” guy. There, I wrote it.
dewey & a dad’s despair
“Dewey…Dewey…Dewey”. Long before the chant of “Mookie”, there was “Dewey”. If you’re older than maybe 35 and from Boston then you know who Dewey is. Like Madonna, Prince and others with recognizable one-word names, Dwight Michael Evans roamed the right field in Fenway Park for my Boston Red Sox from 1972 until 1991.
humanity, friendship & progress—the greatest gifts
Your trust is well placed and Beth and I are always grateful for that trust. Among the things that we have supported through our partnership with the Children’s Tumor Foundation is the Synodos project.
in his shoes
Imagine. 13 years old and getting out of bed to go to middle school and your feet are in such pain and you don’t know why.
camp courage
One of the things most people do not realize is the toll NF can take on their core strength and endurance. I remember visiting Jack’s geneticist many years back and he said that people who have NF can often struggle with many seemingly normal physical tasks and the reason for this is the lack of core strength. He essentially told us that day that someone with NF is exerting SIX TIMES the energy of the person they are walking beside…just walking.
a childhood gone too soon
…he moves to adulthood with bravery I don’t understand, courage I could never muster, wisdom I hope to only achieve and the love of more people than he can count. We will keep fighting with him, for him and for others through our awareness and fundraising initiatives through CureNFwithJack.
“So this is christmas and what have you done?”
My wish for you is that you too have “enough” of what you need and that you shine your light toward others if you can. Lastly, I hope you feel good about responding to John Lennon’s question this year and every year.
the hope at hopewell and the bowl of bracelets
Today we had bracelets, t-shirts and hats again. Today, the kids were told we would be there. Today we raised over $400! We had kids who were buying $1 bracelets for $5 and insisting we keep the change “for Jack”. We had kids bringing in their change to scrape up a buck so they too could wear a bracelet. We had kids by t-shirts for $10 and pay with a $20 and refuse to take the change. “My Mom said to keep it.” It really was amazing today. Probably my most productive hour all month!
A coach who became a friend who became an advocate
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.
He stood up and started it all
We knew Jack had NF right after his second birthday. For quite awhile Beth and I were pretty devastated by the news that our boy had a genetic disorder. In fact, when we initially found out we were pretty paralyzed with fear. We were young parents with another child on the way and could barely say much less spell Neurofibromatosis or what to do about it.
Jack o’brien burke—An impactful 12 years with much more to do.
When we decided that we needed to do more it was shortly after his surgery on his eye when he was just 6. Surgery to reduce his neurofibroma needed to be done and we are forever grateful for Dr. Katowitz but it caused him so much pain that Beth and I wept for him with not much else to do. He was resilient, and he was amazing. He was MY BOY.
the game changer, reggie bibbs
And then today. Today I saw my REAL hero in my hometown newspaper. Reggie W. Bibbs and I are acquaintances at best, Facebook friends for sure and have an unfortunate tie that binds us, Neurofibromatosis. Like my boy Jack, Reggie has NF. I am merely the father of someone that has NF, so I can’t fully understand Reggie’s battle.
september is childhood cancer awareness month. a father’s message.
My friend, Steve Paris’ daughter Mary Elizabeth died last year. Cancer killed her. 12 years old. Can you imagine that pain? I attended her service and was struck by a number of things. I was amazed at the grace and dignity of the Paris family. In what is the worst time in their lives, they rose up and celebrated Mary Elizabeth and her impactful life.
tough question. tougher answer. toughest kid.
“I like warm compresses on my hands please. Helps the needle, you know. May I please have the numbing cream too? Use my left hand; I think the veins are better. Don’t forget to flush the needle after please. They forgot once during chemo and they had to re-access my port. That sucked.”