Jake's Blog

T'was the night before chemo....

Superman!
I don't have anything cute or deep or inspiring to say tonight.  I am just a Dad waiting for his son to have chemo tomorrow.  I am not unique unfortunately but it doesn't make it easier.  I spent a bit of the day with him, Starbucks in the morning and a special post-school movie.  I just wanted it to be a good day for him.  I won't go on too long tonight, not much more to say.  I know this... my... Continue Reading

Tonsils, Triumph and Tribulation

Jake and Jack
It has been several weeks since our last update.  Lots to report and as I warned before, if you want to read on…it is a combo of good and bad. Let’s start with Jack’s biggest supporter. Luke.  He has been suffering for quite awhile with tonsils and adenoids thatjust constantly make him sick and uncomfortable.  Tomorrow he has surgery to remove them and get on a path of comfort and restful sleep... Continue Reading

HE did NOT sign up for this...but Beth and I kinda did

Who ya gonna call?
If you have been following the latest news over the past 7 days about Jack you know that it has not been good.  In a matter of seven days we learned quickly about chiari malformations, cerebral tonsils, CSF, brain stem tumors and the list goes on.  What started as an annual (routine) MRI set us on a course we hoped we would not have to travel.  One that many parents inside and outside the NF... Continue Reading

A harsh dose of reality and a path of continued hope

On my post last Friday, I told you I would update you and share events with you whether it be good or bad.  Here goes: You may recall that Jack was having some issues with pressure on his brain due to a chiari malformation which is causing his brain stem and cerebral tonsils (yes you have more than one set of tonsils apparently) to get squeezed together causing some headache pain.  We were... Continue Reading

Jack Burke, NF, MRI's and Progression

If you are reading this then you were probably redirected from facebook. The last 24 hours has been very challenging for us.  As you may know, yesterday Jack had yet another MRI.  Again, he came through it amazingly well and is a very courageous 8 year old.  I'm saddened to say that he has become used to a process that no child should get used to. Ever.  I posted the update yesterday about his... Continue Reading

Welcome to CureNFwithJack!

Jack, Beth, and Jake
We have created this website to provide awareness about Neurofibromatosis (“NF”), a genetic disorder which has affected our son Jack. We hope that creating awareness of NF, bringing people together, and supporting the medical community in its research endeavors will lead to the day that NF no longer exists. Please read and learn about NF, Jack, the local community, and what you can do (no matter... Continue Reading