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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.

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

    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.

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    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

      “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.

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      • Recipient_2024_Crystal_Destination_NYC_Checklist1

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      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