Jake's Blog

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

The Game Changer, Reggie Bibbs

The Game Changer
My friend, Cathy Bilotta, shared a Facebook post this morning with an article from my hometown newspaper, The Boston Globe. Usually when I read the newspaper I scan the sports section and look through the articles pertinent in the news or business. Newspapers connect you to the world. They connect you to people. Your heroes and your villians are written about daily. For me it is usually those... Continue Reading

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.  Steve, who I did not know well at the... Continue Reading

Tough Question. Tougher Answer. Toughest Kid.

On Friday, Beth and I took Jack in for his MRI.  We have made that trip so many times with him.  A few days before the feeling starts to kick in. One I can't describe, one you have to experience, and one I hope you never do.   The anticipation, the loss of control, the inability to change the path again for my boy all comes back.  I resent the familiarity of this process so much.  I wish it were... Continue Reading

Bill and Lilly Ann

Lilly Ann and her parents.
Other than my wife Beth, nobody has written here on this blog.  Until today.  Bill Brooks is a fellow NF Dad who has amazed me since the day I met him. He is passionate, compassionate, smart, funny and NO time for BS.  His daughter, Lilly Ann, has NF just like Jack but has had many challenges and has approached them with a grace and dignity that astounds me.  I have met her a few times and I can... Continue Reading