I’M FROM: Brookfield, Illinois (30 minutes from Chicago)
DIAGNOSIS: Neurofibromatosis Type 2 (NF2), a rare genetic condition that predisposes patients to tumors of the brain, spine, and peripheral nervous system.
What do you like to do for fun?
Even though I have a pretty much nonfunctioning second hand, I play a ton of video games, and it’s definitely my favorite thing to do.
Do people ever ask you about your arm?
Yes. Some of my online friends ask me about my arm. Depending on how well I know the person, I try to sum it up pretty shortly. I’ll say, “This arm doesn’t work as well as the other, and my fingers don’t work as well; therefore, I am not able to play this game as well as you could.” If I know the person better, maybe I’ll tell them I’ve had multiple surgeries, and sometimes I’ll even give them the whole story.
What were the surgeries for your arm like?
Basically, I had a tumor in the brachial plexus, and they removed it. I don’t understand the whole thing, but they transferred around a couple of my nerves and a couple of my tendons and basically rewired my arm after getting rid of the tumor there. Now, my nerves are trying to reactivate because they were moved around. They are now trying to do one thing, but they’re meant to do another.
Do you have any advice for children living with NF2?My only advice is to stick with it. Keep your head up! I had my surgery a year and a half ago, and honestly, it’s been a great journey. My hand isn’t back to 100%, but it’s getting there slowly but surely. There have been times when I thought my hand wasn’t going to get better, and I have been in a deep, dark place before. It will get better. That’s my advice for living with NF2.
Any advice for parents of children with NF2?
I would say that parents who see their kids starting to show symptoms of NF1 or NF2 should try to figure out if it’s NF2 fast before it gets too bad. We figured out I had NF2 in early 2019, and it took us until mid-2020 to get the surgery figured out, and by then, my hand was almost dead. So my advice would be to act fast. I know it’s hard to act fast and get the right healthcare when there are barely any doctors in the world who can do the surgery, but do what you can.
If people wanted to learn more about NF2, who should they ask?
The House Institute Foundation is dedicated to improving the lives of children like Max through NF2 Research!
Over the past five decades, House physicians and researchers have been leaders in the field of NF2 research. Some of our most seminal discoveries include:
- Establishment of in vitro cell lines that are used around the world to test drug therapies for NF
- Development of surgical techniques for treating vestibular schwannomas associated with NF2 that are used worldwide
- Development of restorative hearing technology that is critical when the cochlear nerve is damaged by tumors
The future of NF2 research here at the House Institute is personalized medicine for patients with NF2. Utilizing our unparalleled bank of tumor tissue samples, coupled with a multidisciplinary approach, we are partnering with leaders in the fields of genetics and proteomics to identify targeted treatment options for different NF2 tumor profiles.
Clinical Research Coordinator examining NF tissue samples.