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Month: July 2023


Neurofibromatosis Type 2

Destination: Central Coast of California

Travel Year: 2023

My Story

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“My name is Rhianon, I’m 45 and living in Seattle. I come from a small family in California that had NF2. I was diagnosed when I was around 4 or 5 (my right eye started turning), then everyone else was diagnosed soon after. “Everyone” being my mother, uncle, aunt, and grandmother (who died before I was born). My great-grandmother had married a man with NF2. As for my dad? I never knew him, mom left him when I was 2. I heard he was abusive and denied I was his.

I received my first hearing aid in first grade (but I was too much of a rebel to wear it). Except for my right eye being closed (ever since I could remember), I was in pretty good shape. But looking so different, in a small town, still wasn’t easy. People have stared at me my whole life, especially kids. I hated it. I thought I was pretty cool, but I never really felt like I “fit in”. That’s still relevant today, a misfit, but a proud one! Took me several decades to realize I’m awesome, it doesn’t matter if everyone can’t see that.

I spent the last 20 years living in Seattle… AND LOVING IT! So much to do in a city, and so much diversity. Worked as a web designer, got into photography, learned ASL, met friends from around the world… but my favorite part? My team of doctors aren’t far away, and they know NF2 very well. My mom used to have to drive long distances for that kind of attention.

“I had to quit working 10 years ago, and now live on disability (with HUD housing). Headaches and brain fatigue made focusing on a project for long hours impossible. My vision is getting worse, my hearing is gone (but I have a cochlear implant), my balance is poor, my spine has tumors, and so does my brain….but I ain’t done living yet! I’m a big believer in appreciating everything you can still do, no use of crying over what you lost. Enjoy what’s left while you can.”

This disease is beyond scary, and I do my best to not allow myself to crawl into that black hole of fear. I have to remind myself that I’m not alone, daily. I got a tattoo on my wrist to remind myself of that. ‘Someone’s looking out for you.’ (No, I’m not always successful at fighting the fear, but I have a great group of friends to help on those days as well.)”

My Health

Daily Challenges

  • Fully deaf; cochlear implant on left side (still don’t understand speech)
  • Right eye closed + no depth perception or control of eye
  • Severe dry eyes
  • Severe brain fatigue

Ongoing Health Issues

  • Slight facial nerve damage on right side
  • Deteriorating vision in left eye

Major Procedures

  • 3 brain surgeries + shunt and cochlear implant placed
  • Optic nerve tumor removed
  • Spinal tumors + loss of balance
  • Proton therapy for brain tumor + skin cancer removal twice (caused by proton therapy)

    Total Surgeries: 8

    Making Travel Plans

    “I don’t know if my ‘top dream’ fits your criteria, but my gut keeps telling me to try…”

    Rhianon’s application letter immediately captured our hearts. A few months earlier, she had shockingly discovered who her biological dad was and that she had two half-sisters and three nieces. And it turns out they live in the area she grew up in – the Central Coast of California. Rhianon moved to Seattle 20 years ago and had always longed to make a trip home again, but it was too expensive. With a deep desire to meet her family (after being alone since the age of 17) and an eagerness to revisit her old stomping grounds, she took a chance and applied for a journey.

    Rhianon is deaf because of NF2, but thanks to Facetime’s new caption feature, she had already spoken to her family multiple times. After texting with her sister and niece daily, she said it’s clear they’re not “afraid of me being deaf or having NF2”. Obviously, there was an emotional risk for Rhianon going on this trip, but we all believed the payoff would be more than worth it!

    When it came to planning her itinerary, we took a slightly hands-off approach compared to our typical process. Rhianon and her family worked together to create a list of fun activities and set their schedule for the week. We wanted to do everything in our power to create a memorable and safe experience, but to respect the unique nature of the situation and let them sort out the details themselves.

    Seeing her family and hometown were Rhianon’s top priorities for the trip, but she also wanted to spend a little time at the end relaxing on the beach with her partner. She also shared that she’s never stayed in a fancy hotel or ordered room service. We knew that a little dose of luxury was the perfect way to end her vacation, and what better place than Santa Barbara! 

    Half of my excitement for this trip is to finally get to meet the family I never knew I had. The other half is just seeing “home” again, and sharing it with my long-time partner. Very excited to see my old “stomping grounds”, and what has changed. I know I have. I’m no longer the awkward girl that was ashamed of who they were. I’ve grown a lot since then, and want to prove it to myself. My positive attitude will outshine my physical flaws.

    Travel Docs

    Being Positioned created a 6-day itinerary for Rhianon to eat, explore, and sightsee in sunny California.

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    Destination Central Coast of California

    First off, I have so much gratitude for Being Positioned, and how much they helped me to have such an amazing adventure. Finding out you have family is pretty amazing. But being able to fly to CA to meet them and see “home” again (after 20 years) was over the top!

    Not only did we meet, but they welcomed me with open arms. Physical challenges didn’t matter, they accommodated and helped however they could. Was a good reminder that you really aren’t “alone” in the world, nor need to be isolated.

    “It was a very full schedule, seeing Hearst Castle, beaches, small towns, enjoying my favorite restaurant again, lounging in a hot tub… but totally worth it. Having family along for most of it made it even better. The BBQ and playing Mini Golf with them were probably my favorite moments.”

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    Completed Activities

    Meeting Biological Family for the First Time • Hearst Castle • Mini Golf • Eating Lots of Mexican Food + BBQ • San Luis Obispo + Pismo Beach • Santa Barbara • Massages • Beach Day

    What was my favorite moment?? The fact that the adventure isn’t over yet! I’m still in touch with them, and we are already making plans to hang out again. :)”

    Getting to do all this stuff, without having to worry about money or doctor visits was definitely a highlight. Being free to enjoy the moment with no worries, is pretty priceless.

    Normally I’m shy in groups, but that wasn’t the case here. There was no time for that! So I brought some mics to help my phone captions and did my best to stay in the conversations in the car or while eating. That helped my confidence a lot! I looked at getting to know them as a challenge, a good one. 🙂

    Dad’s friend was with us a few times and knew ASL. That helped bridge the gap as well while she interpreted and helped me tease him a little lol. 

    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



    Destination: California

    Travel Year: 2023

    My Story

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    I clearly remember the day my brother and I were diagnosed with Von Hippel-Lindau Syndrome (VHL). I was six years old and he was ten. As kids, we had no clue what that meant for us. As it turned out though, the rough road ahead was just beginning.

    This rare and disabling disease started to manifest when I was ten. My first experience was having a laser surgery to remove a tumor from my eye. My first major surgery was a lumbar surgery to remove a tumor from the spinal cord when I was eighteen.

    I’m not sure what a “normal” childhood looks like, but my entire youth revolved around seeing my father (who also had VHL) go in and out of hospitals. His life was basically one surgery after another. His will to fight was unbelievable. Seeing him go through all of what he had to face in his life was inspirational. He was a good man and a great father. He helped me out all the way until the day he passed away in 2016 – three days before my 30th birthday.

    “Starting in early adulthood, people with VHL may develop tumors in their brain, spinal cord, eyes, kidneys, pancreas, and adrenal glands. These tumors are most often benign (not cancer), but some can be malignant (cancerous). Due to this medical condition, I was not able to work as much as I would have liked and financially that has made things rough over the years. I have learned to keep a positive outlook in life and what doesn’t kill you makes you stronger.”

    Going on my Being Positioned journey will be an amazing opportunity to make some memories with my wife and relieve stress. Something I read in a travel book stuck with me over the years and I would like to share it with you guys: ‘Traveling has the ability to take you out of your daily routine and into new surroundings and experiences and this can reset your body and mind.’ My dad would always bring us on summer road trips, and it was very therapeutic for my mind over the years and a way to take a short break from the medical stuff.

    My Health

    Daily Challenges

    • Dexterity – relearned how to walk twice and how to use hands
    • Walking – relearned how to walk twice

      Ongoing Health Issues

      • Unable to regulate body temperature
      • Numbness in hands, feet, legs, and left side of stomach
      • Balance issues + incontinence

        Major Procedures

        • Brain surgery
        • 10 spinal cord surgeries
        • 4 kidney surgeries
        • 2 adrenal gland surgeries
        • Multiple laser surgeries on eyes to remove tumors
        • Currently on chemo

          Total Surgeries: 17

          Making Travel Plans

          Justin applied to Being Positioned, hoping to give his bride the honeymoon they could never afford on their own. His wife, Edmarie, is from the Philippines. They moved to Seattle, and she was missing home and struggling with the endless gray skies. She loved the idea of a romantic beach vacation with her new husband. They were also in the process of having their home built through Habitat for Humanity, which requires a lot of time and effort. They were logging lots of “sweat equity” hours and needed to delay their trip a year so they could finish the requirements before their house was ready. This gave them plenty of time to dream with our team about possible beach destinations.

          Justin wanted to take Edmarie to Disneyland so she could officially visit the happiest place on earth. And we knew LA was surrounded by plenty of beautiful beaches for Edmarie. Hiking to the Hollywood sign, seeing the La Brea Tar Pits, and driving along Route 66 all sounded like wonderful additions to their beach vacation. They also love trying new foods and wanted a location with incredible restaurants. LA quickly became the perfect destination. Giving them a chance to relax and enjoy the beautiful sunny weather, but also make fun new memories as newlyweds.

          A month after moving into their new Habitat for Humanity Home they set off on their LA adventure! It was a summer they’ll never forget, and we loved giving them an extra special start to their marriage.

          We chose Los Angeles for our journey destination. I find that being around water is peaceful and helps me with my anxiety. I have always liked being around nature and it has a very calming effect for me. We are both looking forward to relaxing on the beach, dipping our toes in the water and smelling the fresh air. I am also really looking forward to exploring the city and going sightseeing.

          Travel Docs

          Being Positioned created a 6-day itinerary for Justin to eat, explore, and sightsee in Los Angeles.

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          Destination Los Angeles

          As patients, we often experience high levels of stress due to the diagnosis, the treatment, the side effects, the uncertainty, and the emotional impact of having a life-threatening disease. Therefore, finding ways to cope with stress is essential for people who have rare genetic disorders like us.

          Being Positioned allowed me to get away from the reality of hospital life and to have time for myself away from the stresses of daily life. Driving down the Pacific Coast Highway, exploring a random place in Malibu or going off the beaten path was such an amazing feeling and a great way to relieve stress.

          Also If it wasn’t for the generosity of Being Positioned for granting this journey, we wouldn’t been able to afford a honeymoon, and this trip to California was an unofficial honeymoon for us.”

          We explored multiple places around LA for 6 days. One of the most memorable places that we went was Disneyland. We were able to spend the entire day exploring, not to mention the multiple rides that we did. It was indeed the happiest place on earth. My wife and I will forever be grateful for this once in a lifetime opportunity that Being positioned has given us.

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          Completed Activities

          Disneyland • Griffith Observatory + Hollywood Sign • Santa Monica Pier • Hollywood Walk of Fame • Venice Beach • La Brea Tar Pits + Museum • In-N-Out Burger • Couple’s Massage

          I am a huge fan of Anthony Bourdain and I wanted to end this with one of his quotes:

          “Travel changes you. As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life—and travel—leaves marks on you.”

          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