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.  Initially we shared the news with just family and very close friends.  The discussions would create more questions than answers and also a heavy dose of angst on the part of the person hearing the news.  What hurt people the most is when they heard “no cure” and “no treatment”.  I stopped telling people for a while.  We spent much of our time seeking out help and advice and resources.  The great Dr. Bruce Korf was the first person to officially diagnose Jack with NF.  He was kind, honest and deliberate and despite the fact that he was delivering life-changing, awful news he provided much needed information and encouragement.

Back home in Virginia, Beth and I began to identify doctors and hospitals to monitor Jack and provide care as we continued to learn more about the disorder and how it may impact Jack.  We continued to do this and began our foray into a myriad of doctor appointments, new medical terms and a whole bunch of anxiety. Luke was a gift delivered at the right time and we were so fortunate to find out that he did not have NF.  We learned about different NF groups and investigated a number of them including the Children’s Tumor Foundation.  When we moved to Atlanta we soon came to learn about a local group called the Tumornators made up of 3 brothers Drew, Chad and Ben Leathers and their family and friends.  Beth attended one of their fundraising events and came home to tell me how great these people were.  I had no idea at the time that we would come to be so close to this family and take up the fight to ENDNF with them.

We continued to live our lives the best way we could but still not knowing so much about what the future held for Jack and our family.  He was monitored by doctors in DC and of course here in Atlanta as we watched him go from preK to Kindergarten with Luke always close behind.  We learned more about NF and what resources were out there for families both locally and nationally.  Beth was always looking to help inform our family on what we could do.  We joined in the Racing for Research program through the Children’s Tumor Foundation where we raised money to bring Jack to Daytona along with other kids with NF to meet the drivers and sign the car and watch the 24 Hour in Daytona.  In 2011 we took our first trip and among other things that were awesome, we met Ryan Eversley.  I had no idea that night and over the next day or two how profound that relationship would become and how much he would do to advance the cause of NF.

Then it happened.  That evening in a room full of families, who also had people with NF, Jack got up and stood on his chair. He wasn’t the only one who did it but he may have been the only 6 year old to do it.  He stood up and told the room that he had NF.  He proceeded to talk about whom he was and why he was there and I was standing off to the side while all this was happening.  It may have been all of one or two minutes but it was powerful.  He had no fear.  He shared with a room full of strangers the most personal thing about himself.  I was blown away.  For 4 years I felt like a helpless father who could do nothing for his son.  Sure, we provided the best medical care we could and I think a pretty good life for a young boy but the NF was still there.  We needed to find a cure and we needed to do it for Jack and others.

Not too long after that evening we began CureNFwithJack.  6 years later we have accomplished things I never thought possible.  We have hosted over 20 golf events, wine tastings, lemonade stands, garage sales, and so much more.  We established a social media presence that has over 3,000 followers and created a great website. We had Coca-Cola, Converse, Anthem Blue Cross Blue Shield, Verizon and many other corporations join our fight!  We have engaged with the famous and infamous, he has had random people thank him in person because they met him on Facebook or Twitter and his story has helped them.  He has been interviewed on TV and radio. We hosted a medical symposium leading to a published article on how to better help people with NF.  We have partnered with Cupids Undie Run for the past 4 years and have had teams in 10-12 cities every year, over 1200 runners on his teams and have raised over $800,000 for medical research through that partnership.  We have donated thousands of dollars from CureNFwithJack and will continue to do so.  Our goal in 2006 was to raise one million dollars in 10 years; we did it in 5 years.

Jack is now 12.  Today he goes in for another MRI on his brain.  How’s your Monday?  I’ve written about that and the associated anxiety so no need to repeat it here. You get it.  The world is very different than it was that night when Jack stood up. We have lost some incredible people we knew because of NF.  That’s the awful piece and yet there continues to be hope.  6 more years of research has happened.  Clinical trials have been increased.  Annette Bakker and her team at CTF continue the fight every day.  We are not going to stop.  2017 finds us post undie run and now into our first of many events and golf tournaments and other exciting things to come.  We are hopeful.  We still need you.  Jack still needs you.  Six years ago, he stood up on a chair by himself and declared war.  Today, while Beth and I will once again be with him. He will lie alone in an MRI machine because in the end it is HIS fight.  The single most incredible thing that YOU do by attending an event, or donating to our cause or wearing your CureNFwithJack shirt is that you make it clear that you are with him too.  It is an awful thing this NF.  I hate it.  And be sure it is awful to watch your child go into an MRI machine and hope that it finds nothing but good news.  But the beauty and the humanity you provide to this brave young man should never be minimized.  He stands alone at the most difficult times because that is what he has been dealt, but he need not look too far to see that he truly is not really alone.  Send good thoughts to Jack today.

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