Jake's Blog

Lucky 13

LUCKY 13- Today is the 13th anniversary of one of the best days of my life.  I was so excited to become a Dad and all the things that I thought came with it.  Jack was perfect.  He had 10 toes, 10 fingers, and a big smile that showed you that he was Grampy Burke’s grandson.   He brought me more joy then I thought I could ever experience and from almost the very start he had that great personality... Continue Reading

"So this is Christmas and what have you done?"

There are so many great Christmas songs and my favorite is Little Drummer Boy. Right up there though is John Lennon's Happy Christmas (War is Over). The first lyric always causes me to reflect on the question it poses and often I feel like I've fallen short of whatever self-expectation those words conjure up.  I don't mind because this reflection helps me strive to do more, to be better, to be... Continue Reading

The Hope at Hopewell and the Bowl of Bracelets

Hey guys!  Want to buy a bracelet?
Many of you know that Jack recently started middle school.  Now, middle school is a big transition for anyone and my estimate is that about 99.9% of the adults I talk to hated middle school for a myriad of reasons.  This is where kids can become jerks, homework becomes real hard and EVERYTHING else that comes along with becoming a teenager.  I must admit that I was concerned about Jack... Continue Reading

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... Continue Reading

He stood up and started it all

I'm Jack
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.  Initially we shared the news with just... Continue Reading

Jack O'Brien Burke- An impactful 12 years with much more to do.

Every parent gets excited about a child's birthday, right?  Three of my favorite days of any year are the birthdays of my kids.  Today is my first child's birthday.  Jack O'Brien Burke made me a father and gave me a new perspective on life on January 24, 2005.  Despite being 37 years old and very excited...I was nervous.  My life was going to change forever! As it turned out, I had no idea.  Jack... Continue Reading