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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.

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