Jack was two years old when he was diagnosed with NF. He currently has a plexiform neurofibroma (a more complex tumor) in his left eye orbit, and is being closely monitored for changes in his optic nerves and certain areas of his brain. He has had numerous MRIs and countless tests, yet he remains one of the most out-going and lovable children you will ever meet.
UPDATE SEPT 2013: 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. Upon further inspection of his routine MRI, they also discovered a glioma on Jack’s brain stem and they need to intervene immediately. Since NF kids can’t be radiated and surgery is not an option, he will begin 15 months of chemotherapy to battle this glioma and hopefully shrink and kill it.
Let’s Cure NF for Jack. No kid should ever have to go through this…