Jack O'Brien Burke- An impactful 12 years with much more to do.
(Jake and Beth live in Atlanta. I was on University staff at UMass Lowell with Jake)
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 was born just after 11 PM that night and was a fairly "normal" delivery but of course, Beth did all the work. I tried just to be "not stupid", supportive and out of the way. One of the greatest photos I ever took was the moment of his birth. We did not know what are baby was going to be and we didn't much care but they said "It's a boy" and I smiled. Beth held him and then they took him to the nursery and kicked me out so I could be lost wandering the halls with the most amazing feeling of joy, fear, love, anxiety, confusion, determination, imagination that I ever had. My mind race a million ways about a million things. When I met him again just an hour later, I was equally amazed to see my boy. MY BOY! He had all his "stuff". Ten fingers and toes, two eyes, a mouth and a nose and he was mine. Jack O'Brien Burke, it just doesn't get better or more Irish than that. He had a tough look to him and was a great baby. As his Dad, I was already hoping and imagining great things for him. What I couldn't have known was that he also had an incurable genetic disorder that would be discovered about 2 years later.
Reminiscing today about that night brings a smile to my face. I was younger then and had NO idea. I laugh now at the worrying I did about a cough or a sneeze or a crazy look I would get from my boy. Little did I know what lay ahead for him. The boy was going to be impactful more than I could ever know. Fast-forward to the birth of his brother, Luke who also was amazing and while we recently had found out that his older brother had Neurofibromatosis, he was spared a similar fate. We didn't know about NF before Beth became pregnant with Luke so we didn't know what fate had in store for him. Thankfully, he was not one of the 1:3,000 we have told you about. We learned so much in those years between 2 and 6. We held much of it close and not sharing much to anyone, in some cases not even family. I sometimes regret that now, but I am firm in the belief that we said what we said and told what we told to others when it was right for us. We learned about the myriad of things that could happen to our Jack. Many of them to horrific to contemplate even now as many of them are still possible. We learned well to advocate for him and ask questions of his many doctors and seek the best care for him.
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 resillient, and he was amazing. He was MY BOY.
Over the next many years until today, Jack has made an incredible impact on his family, his community in Georgia, and the NF community and beyond. He selflessly has given his story to others. He has allowed us to share his triumphs and tragedies with the full knowledge (even at his young age) that his story and the associated awareness and fundraising activities would help him and many other people. He has met thousands of people along the way and too many to list here. They have been famous and infamous, anonymous and well known, all generous with their time, talent and treasure for CureNFwithJack. He has met legends that are now friends, racecar drivers who are his caring buddies especially the incredible Ryan Eversley. He made Clint Eastwood's day and I know because I saw it in his famously squint eyes! He educated a room full of adults on how to be better team players against the worst of adversity. When he was in 3rd grade he stood proudly in front of his classmates to teach them about NF and what he has to deal with reassuring them he would be OK and making them aware that their support for him and each other is not only needed but it is essential and should be who they are as people. I watched as he stood up in front of hundreds of people at just 5 years old and told a room full of other NF kids about NF. Last year, minutes before he was to have brain surgery, I watched him put a fake arrow through his head so he would perhaps startle his surgeon and giggled at that fact. He had no way of knowing his father, through his fake laugh, was dying inside at the though of what he was to endure.
I watched him for 52 weeks as an 8 year old go get his chemotherapy. He engaged with his nurses and doctors and complied politely every damn week. Same with the many, many MRI's that make grown ups wince would just be routine for him. Without hesitation and with out SEDATION he would let them put him in that tube with the hope that we would get good news for his trouble. Thankfully, we sometimes do. I have watched strangers come up and ask him if he was "CureNFwithJack" and thank him for all he has done. He was 9 when that happened the first time. Impactful.
Many of you have traveled this road with him. You have golfed; you have run in your underwear, attended a myriad of events to let him know he has impacted your life. You do this for him and it means the world. We have had a pretty good run these last few months, dare I say. That is what we are thankful for mostly is that he is OK right now. No imminent surgeries, no new tumors, no chemo, maybe forever. But this "sonofagun" NF has a way of making you complacent and we won't be, ever. We fight and 2017 won't be any different and we still need you. Jack needs you. Stay with him folks. I "have to" because I am his Dad. You don't. But you choose to and it means the world to him and to us.
I do know this. I was filled with joy 12 years ago that I never could believe I could feel. These past 12 years have been an amazing journey with Jack. One that has presented emotions I never thought I had and situations I thought I could never face. But he, Jack O'Brien Burke has led the way. He is a soldier in a battle for his life, educator of a community around him, advocate for others, and one nice person. I don't know what lies ahead, none of us do but if you told me 12 years ago that we would be battling NF and raise over ONE MILLION DOLLARS in SIX YEARS for research in his name I would have said you're crazy. Well, maybe we are crazy. Impactful. Here is hoping that within the next 12 years NF is in the past for Jack an others and all we would do is reflect on the impact he has made on all of us. Thank you for your interest, your support, your advocacy and freindship. Thank YOU for your impact, it is life changing. Tomorrow there is hope and you are among the reasons why. Don't ever forget that. EVER. #ENDNF #FNF Thanks,
Jake, Beth, Jack, Luke and Grace http://www.curenfwithjack.com/