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Tag: Journey New York

Denise

Written by Christina Menkemeller on .

Neurofibromatosis Type 2

Destination: New York City

Travel Year: 2024

In Loving Memory

Denise’s Journey is sponsored in loving memory of Gregory John Adami (62) and Thomas Joseph Adami(60). Gregory served as Tax Director for a major oil service company in Houston, Texas, and died in 2024 from heart failure. Thomas served as a captain in the South Bend Indiana fire department, where he served for 32 years. He died of cancer in 2024. Both brothers were involved in activities serving their fellow man and their communities. Their memory is served well by supporting Denise in this much-deserved Journey and in supporting the efforts of Being Positioned to provide similar opportunities to other individuals battling debilitating diseases.

If you would like to sponsor a journey in memory of a loved one, complete our contact form.

  • Tom Joseph Adami

  • Gregory John Adami

My Story

I had a normal life growing up and loved it. In college, I noticed my right ear was hearing things less. I graduated and was at my first job when I noticed that most of my hearing in my right ear was gone. I went to multiple doctors, but none could figure out what was wrong. When I returned from working as a missionary in Panama, I saw a doctor that scheduled my first brain MRI in 1995. That is when we discovered I had multiple brain tumors and was diagnosed with Neurofibromatosis Type 2.

I was living in northern CA and had a friend in southern CA studying to be a nurse. When I told her about my diagnosis, she said she had studied it in class and knew a doctor specializing in NF2. I thank God that I was connected to him to start treatment. My life revolves around NF2. At age 30 in 2000, I became deaf. Two years later I met my husband who was born deaf, and we have adopted 2 deaf boys. Through the years, I have had seven brain surgeries, gamma knife, and radiation to treat the tumors that keep growing. I also have had surgeries to remove tumors from my calf and knee.

“One doctor looked at my MRI and stated that I only had one more year to live (this was 29 years ago)…I am happy that I have gotten through each surgery even though some of the doctors said I wouldn’t make it. That I wouldn’t be able to walk. That I would be blind. But I am still here.”

I am deaf now and slowly dealing with more tumors. Headaches and dry eyes bother me every day. I can’t swim underwater and have lost some of my balance. Recently, I have had some vision loss and most likely will not be able to drive soon. I am thankful to Being Positioned for giving me a Journey so I can make some amazing memories with my husband while I can.
Being Positioned has given my husband and I something wonderful to dream about. I was told about this program through a friend and was nervous about signing up at first. It took a while for me to finally do something good regarding my disease. One surgery caused the whole right side of my body to be paralyzed. It took several months of therapy to move and walk again. The older I get; the more tumors grow. I am always thinking about one of my tumors doing damage that will change everything. After my most recent surgery, I decided to apply to Being Positioned and was thrilled to be chosen.

My Health

Daily Challenges

  • Deaf
  • Vision problems
  • Dry eyes + mouth
  • Headaches

Ongoing Health Issues

  • Balance issues (hard walking in straight line)
  • Brain fog
  • Numerous brain tumors
  • Shunt

Major Procedures

  • Seven brain surgeries
  • Gamma knife
  • Radiation
  • Two leg tumor removal surgeries

    Total Surgeries: 9

    Making Travel Plans

    Denise was understandably nervous about applying for a Being Positioned journey after becoming deaf and enduring so many physical challenges due to NF2. But as our team began working with her to plan the trip, we knew that her initial hesitation would soon give way to excitement.

    Our goal was to create an experience that would not only challenge and empower her but also help restore her confidence—reminding her of all she’s still capable of despite her condition.

    Planning Denise’s journey was especially meaningful because both she and her husband, Ted, are deaf. This presented a unique challenge, as we needed to find a destination that offered inclusive, adaptive activities so they could fully enjoy everything together. After exploring various options, Denise and Ted chose New York City—a perfect blend of excitement, culture, and accessibility. They were especially eager to see a Broadway show and perhaps even make an appearance in the background of the TODAY Show!

    This wasn’t just a trip—it was also a time for celebration. During their week in NYC, Denise celebrated her birthday, and the couple marked their 20th wedding anniversary! To make the occasion even more romantic, we planned a horse-drawn carriage ride through Central Park, a relaxing couples massage, and a delicious steak dinner on their final night.

    Their journey wasn’t just about seeing the sights—it was a celebration of resilience, love, and new possibilities.

    “Planning the journey with my husband gave us something to look forward to. I was excited and nervous about going. Nervous because the journey was one of my biggest trips. Going with my husband, who supported me, gave me a reason to go, but without Being Positioned we never would have gone. Every day on the trip created some of the best memories that we have.”

    Travel Docs

    Being Positioned created a 7-day itinerary for Denise to eat, explore, and sightsee in beautiful New York City.

    • Recipient_2024_Denise_Destination_NewYork_Checklist4

    • Recipient_2024_Denise_Destination_NewYork_Checklist3

    • Recipient_2024_Denise_Destination_NewYork_Checklist1

    • Recipient_2024_Denise_Destination_NewYork_Checklist2

    Destination New York City

    The trip itself gave me confidence to continue to enjoy different things. I am finally seeing that I can do more than I allowed myself before the journey. I often walk and lose balance. Having my husband helping me though the crowds at Times Square let me enjoy seeing things without worrying. Several times I started to lose my balance on the busy sidewalk. I was blessed to have my husband holding my hand every day so I wouldn’t fall. Also, nice to hold hands with him.

    We arrived at NYC on Saturday night. It was amazing to see all the lights and huge crowds of people outside. Sunday started with seeing the Statue of Liberty and Ellis Island. Then back to the hotel (using the subway for the first time) in Times Square to get ready to see the Broadway show “Wicked”. My husband and I are deaf and thankful that they have captioning devices for us. That show changed our whole point of view for the movie “Wizard of Oz.”

    Monday was a lot of walking and seeing some of the history of NYC. Walking into Grand Central Station made me feel like I was in a movie! We also saw the Public Library, Rockefeller Center, Penn Station, and Madison Square Garden. The best thing to see was the Empire State Building (don’t forget seeing King Kong). The view from the 86 floor was amazing. After the view we decided to walk around Times Square at night. It looks like Las Vegas strip but 5X larger!

    “Tuesday, we had to wake up early to be on the Today Show! I have never been on TV, so this crossed off a bucket list item. It was interesting to see how they showed the people standing outside (we got a few seconds). We met Hoda and Savannah and got pictures with them.”

    Completed Activities

    Statue of Liberty and Ellis Island • Wicked • Empire State Building • Today Show Taping • The Highline • 9/11 Museum • Couple’s Massage • Central Park Carriage Ride

    Wednesday was the most memorable day. In the morning, we went to the 9/11 Memorial. Talk about memories coming back. It took us 3.5 hours to walk around the memorial because it was so stunning to see. After seeing the memorial, we walked over to the One World Observatory. It is now the tallest building in the US. The most fun part was riding in the elevator to the top. Up on the 112 floor, we ate lunch with the amazing view. Next, we walked over to SoHo to enjoy some more quiet time. Make sure you eat at Joe’s Pizza there; it was worth it. From SoHo we walked to NYU and the George Washington Arch.

    Thursday was our last full day in NYC. It was so much fun to celebrate our 20-year anniversary and my 55th birthday (not always easy to do with NF2). We rode a horse drawn carriage around Central Park. We were able to use Live Transcribe on our phones to listen to the driver talk about the different movies that were made there. Then we had a couples massage (that was perfect timing after the miles we walked every day). My husband gave me a red rose when the massages were finished and is displayed in our bedroom. Going out for my birthday dinner was my favorite part of the day. We have never dressed up to go to a nice restaurant for dinner. Their food was delicious! I loved getting the chocolate cake dessert for my birthday. It’s rare to feel so accepted after becoming deaf and having so many surgeries.

    “Friday, we packed for our night flight home. We had the afternoon to do our final walk around Times Square to Central Park. Walking toward the Park we passed a large red HOPE sign. The sign was perfect for the two of us as we prepared to go back to real life. I will be having my MRI and neurosurgeon appointment in three weeks. Walking around NYC with my husband supporting me gave me the hope I needed to continue dealing with NF2. ”

    We are now home with our two sons and can’t thank Being Positioned enough for all the memories this trip has given us.

    Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

    To learn more about Rare Genetic Disorders, click below.

    Learn More

    Continue reading

    Crystal

    Written by Garrett Nantz on .

    VON HIPPEL-LINDAU SYNDROME

    Destination: New York City

    Travel Year: 2024

    My Story

    My name is Crystal. I am a 44-year-old elementary teacher, currently in my 22nd year of teaching. I have Von-Hippel-Lindau (or VHL). It is a rare genetic disease and I lack a tumor suppressor gene that most people have. This leads me to have lesions in many areas of my body. For me it has been my brain, spinal cord, eyes, kidneys, pancreas, and lungs. Usually VHL is inherited, but there are some spontaneous cases. I personally inherited VHL from my mother, who inherited it from her father.

    I had my first VHL related surgery at age 20- which ruined my plans for a semester abroad in Costa Rica. It turned my undergrad degree into a 5-year endeavor. It has made me cancel flights and many travel plans. It has interfered with my time with my students quite a few times. As of today, I have had 10 brain surgeries, 1 kidney cancer surgery, 2 spinal cord surgeries, and 1 eye surgery. I have to take pancreatic enzymes in order to digest my food properly, and most recently I have become an insulin dependent diabetic. VHL also took my mother from me. She was only 67.

    “Despite all these trials, I still find myself valuing humor and positivity. Having issues like these makes things harder, but I try to make the choice every day to smile and have a good day. What is happening to me isn’t my choice, but what kind of person I am IS my choice.”

    Being Positioned is sending me to NYC this summer and I am so excited! My health concerns have not disappeared, but beginning to plan this adventure has been wonderful.I have spent most of my life not allowing myself to dream of much because my plans are usually ruined. However, aspiring for activities that I never allowed myself to even think of before has been amazing! I am so looking forward to staying in a nice hotel, Broadway plays, museum visits, and so much more! They have made every day a bit more exciting, as this trip is always on my mind!

    My Health

    Daily Challenges

    • Anxiety
    • Frequent scans + appointments while working full time
    • Fatigue from medication
    • Speech articulation

    Ongoing Health Issues

    • Require pancreatic enzymes to digest food properly
    • Difficulty regulating blood sugar
    • Balance problems
    • Nerve pain and/or numbness in certain areas from multiple surgeries

    Major Procedures

    • 10 brain surgeries
    • Kidney cancer
    • 2 spinal cord surgeries
    • Eye surgery
    • Currently on the 1st ever FDA approved targeted therapy for VHL

      Total Surgeries: 14

      Making Travel Plans

      When Crystal first applied for her Being Positioned journey, it was clear she was someone special. We spoke with her medical team and were amazed by the outpouring of love and admiration they had for her. Nurses eagerly took turns on the phone, each wanting to tell our Selection Committee just how deserving she was of this opportunity. After an incredible recovery from her 10th brain surgery, it was clear Crystal needed to be celebrated—and what better way than with the trip of a lifetime!

      Even though Crystal lives in Rochester, NY, she had her heart set on visiting New York City for her journey. She shared her excitement about seeing a live TV show taping and experiencing a Broadway show, both long-standing dreams on her bucket list.

      A huge fan of Harry Potter, Friends, and great food, NYC was the perfect destination to bring her passions to life. When it came to transportation, Crystal surprised us by suggesting a train ride instead of flying. She was new to train travel, and we loved the idea—it added an extra layer of adventure and allowed her to enjoy the scenic views and a relaxing start to her trip. Crystal’s wish list for NYC was extensive, including iconic landmarks and a stop at the Harry Potter Store, but at the very top was attending a live taping of The Tonight Show. We reached out to NBC, and they generously provided VIP tickets for Crystal and her partner Eric! With her itinerary set and a major dream about to come true, Crystal and Eric were ready to embark on the adventure of a lifetime.

      “EVERY SINGLE day of my life is filled with coordinating and going to appointments, making sure I have tests at the appropriate intervals, dealing with results of those tests, being symptomatic because of something VHL related, or recovering from a surgery or procedure. Planning my journey finally allowed me to focus on something fun instead. Of course, I couldn’t ignore the things I previously mentioned, but I was able to have my journey to think about as well.”

      Travel Docs

      Being Positioned created a 7-day itinerary for Crystal to eat, explore, and sightsee in beautiful New York City.

      • Recipient_2024_Crystal_Destination_NYC_Checklist3

      • Recipient_2024_Crystal_Destination_NYC_Checklist1

      • Recipient_2024_Crystal_Destination_NYC_Checklist2

      Destination New York City

      My trip to NYC included so many amazing things! On top of seeing the sites and all of the delicious food, we were also able to take in a Broadway play and a taping of The Tonight Show with Jimmy Fallon! We also visited the 9/11 Memorial and paid our respects, went to The Friends Experience, had a couple’s massage, and saw the city from the Top of the Rock and the Empire State Building. We rode the train to and from NYC, and this is a mode of transportation that I highly recommend. Being Positioned planned and organized all aspects of this trip perfectly! All we had to do is wake up in our fabulous hotel and refer to our day’s plan on an app. From there, we just had to follow the plans and click on the maps or attached tickets if necessary.

      Completed Activities

      Empire State Building • Top of Rock Observatory • The Tonight Show Taping • Broadway Show • Boat Tour • The Friends Experience • 9/11 Museum • The Metropolitan Museum

      “Not having to figure out what to do every minute of every day was wonderful. That in itself was a vacation! Also, not having the stressor of how to pay for all these things took such a load off my mind. Being chronically ill, finances in all their forms are a constant worry, and I would never be able to pull off a trip like this myself.”

      Within 48 hours of returning home from my journey, the scheduled appointments and scans started up again. However, I am going to them with a less anxious mindset. My young and healthy self-loved to travel, and I have been so worried constantly about maintaining my own life that I forgot what traveling makes you feel like. It is nice to be reminded of how big and wonderful the world is, and how many cool things there are to see and experience.

      All our thanks go to Christina and Michaela for planning an experience that will always and forever be remembered fondly! My cup runneth over!

      Each person diagnosed with VHL experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

      To learn more about Rare Genetic Disorders, click below.

      Learn More

      Continue reading