Meet Max and Adam

Author: Adam Rosenberg, NF Network
Published On: 12/7/2020

During times of challenge and difficulty, we lean on one another for support and seek answers for questions that arise. We "look for the helpers," and we are lucky when we find the help we are searching for. Whether you are a newly diagnosed friend or family member or if you are simply staying up to date on the latest NF news and updates, the NF Network is proud to be the helpers in our NF community. In spite of the challenges of 2020, we are still working to enhance the quality of life of those living with NF.

You can help us continue our mission-related initiatives by contributing to our year-end goal. The NF Network will continue to be here for you, just as you continue to be here for us. We thank you for supporting us throughout these uncertain times!


Together, we touched the lives of over 1,600 individuals affected by neurofibromatosis, including Max and Adam. Each new family's questions vary case by case, but all of them end the same - a need for support, resources, answers, and most of all hope. 

"It’s difficult to know where to begin when discussing my son Max’s diagnosis of NF2.  I know that it started with a heart-shaped birthmark smackdab in the center of his forehead.  Light-pink against his soft skin.  His mother and I took it for a blessing, but his pediatrician frowned at it and told us to keep an eye on it.

As he learned to crawl, new marks emerged and took different forms.  Knobby knots of skin on his trunk, the ball of his foot.  Pimples, maybe?  No big deal.  But better to go see a dermatologist just to be safe.  The dermatologist sent us to a pediatric neurologist--I remember distinctly not being able to reconcile that in my head.  What did pimples have to do with my son’s neurology?

Now they wanted to sedate him, do MRIs, EKGs, CTs, acronyms piled atop acronyms, all while Max was learning his ABCs.  Several minor surgeries later--now some of the pimples were the size of grapes--and all we knew for sure was that Max had “something.”   

We lived in that place of uncertainty for about 6 years as we saw various specialists, a peculiar sort of waiting room where life went on normally except for when we were in the hospital.  School plays and tee-ball games, an MRI the following week.  It felt dreamlike in a way, like there was a cloud following us that never rained.  Maybe it never would.

We got the official diagnosis of NF2 in the autumn of 2018 when Max was 8 years old, in between little league seasons.  I know the minute the rain started: a game of catch on the sidewalk, and he was slinging the ball in there.  My little southpaw was starting to throw hard, really hard, strike after strike, but when I would toss the ball back to him, easy tosses he’d have caught the summer before, his glove would fall off.  Come on Max, put your hand out like a stop sign.  He couldn’t do it.  I said, “come on, kid, straighten out those fingers.”  He said, “I can’t.”  “You can,” I said.  “I really can’t,” he said urgently, a panicked look in his eyes.  I crouched down and held his hand in mine.  Is this new?  The middle and ring finger refused to move.

That’s how NF2 works.  It’s slow at times, patient, attacking the body from the inside out, until one day it shows up on the surface.  Winter now, and he had no control of those fingers at all.  In Spring, the entire hand seemed to wilt-no wrist function, no pinky.  Medicine can also be slow--we saw many doctors, but got no clear answers.  We finally found out that Max had a large tumor in his brachial plexus that was sapping all nerve function to his right arm.  At the same time, the telltale sign of NF2 reared its head on the MRI: vestibular schwannomas on both audial canals.  Genetic testing confirmed it.

Late 2019 and early 2020 was a blur of hospitals, experimental treatments, bills with impossibly large numbers, and negotiations with insurance companies.  It was the first time in my 47 years that I felt a total loss of control, and it was terrifying.  I don’t think my wife and I had even gotten our heads around the diagnosis of NF2--we were still in a state of triage.  Ok, NF2, but what about the arm?  He needs his arm. 

I called the NF network--I want to say on a whim, but whim isn’t exactly the right word--it showed up on my browser at the exact moment it needed to.  I called to see if they could help me with insurance problems--insurance denied the chemotherapy one doctor recommended for Max, and on my table was a bill for around 33,000 dollars.  How did we get here? I spoke with Deb on the phone who must have been overwhelmed as I told my story--where to begin?  She put me in contact with John Manth, Kim Bischoff, and others in the network. 

The late great Fred Rogers famously said, “Look for the helpers.”  I found them at the NF Network.  I learned more about NF2 in an hour long conversation with John than I had in the last year, but perhaps more importantly, I learned that there are wonderful people out there who will help you carry the water when it’s too heavy, and that you can’t care for something as complex and precious as a child with NF2 without support.

I am happy to report that Max is recovering from surgery this past May to remove the tumor in his brachial plexus as well as perform nerve transfers in his right hand.  We travelled out of state for the surgery--an option I had not considered until I spoke with the NF Network--and he’s able to move his wrist again, to click a mouse with his fingers again, to pet his cats again with both hands.  We are hopeful that he will have full use of his right hand by Christmas.

We were accepted into the NF2 clinical studies at the National Institute of Health, but that’s postponed for now due to the pandemic.  These are options I didn’t know existed until I connected with the NF Network.  We now have a coordinated team of specialists in three cities (Chicago, Boston, and soon Bethesda) who are all keeping tabs on Max and his NF2.

They say it takes a village to raise a child--I don’t think I truly knew what that meant until NF2, and I didn’t know where that village was until I connected with the NF Network.

As I said earlier, it’s hard to know where to start when discussing my son’s diagnosis.  I can tell you the beginning, and I can tell you the middle, but I can’t tell you how the story goes from here.  I know that our family can face the uncertainty with confidence due to the knowledge and compassion offered us by the NF Network.  Thank you for everything you’ve done for us!"


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