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
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.
“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.
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.
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.
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.
I have dealt with terminal illnesses all my life since my mother was diagnosed with Von Hippel-Lindau Syndrome (VHL) when I was just 4 years old. She has struggled most of her adult life with the demands of being ill. I struggled with different health problems for years before doctors diagnosed me at 24 years old with VHL and stage 4 Renal Cell Carcinoma. VHL is a rare genetic disorder that causes cysts to grow throughout your body that turn into tumors. We lack a gene that help fight cancer cells, so these tumors often become cancerous.
This was a devastating blow as I was still very young with dreams in mind. In 2014, shortly after being diagnosed, I underwent four surgeries. I was left with half a kidney and metal infused in my scalp and spine.
I also had eight months of rehabilitation to relearn how to walk again since I was numb from the waist down after my spinal surgery to remove tumors.
During that year, my doctors told us that I would be very fortunate to make it to 30 years old, considering the rapid pace of the disease and the damage already done.
“After everything that happened that year, combined with medications, MRI’s and CT scans, I had to file for bankruptcy. I thought I’d never undergo that much in a year again, but in 2017 I underwent another three surgeries to remove more tumors. The knock downs these diseases hand out are hard and vicious, leaving no room for anything fun.”
This disease takes a lot of mental, physical, and emotional strength to get through each day. Being diagnosed at 24, I wasn’t going to let it steal my life, but in a sense it has. I’ve always wanted to travel and before my diagnosis, I did. Now though, my dreams of traveling have diminished. A trip to do something nice will be amazing, as it may be the only one I get outside of traveling to a hospital.
My spouse and I were married in 2016 and have planned our honeymoon a few times only to have the money for it stolen by medical needs.
This disease takes a lot of mental, physical, and emotional strength to get through each day. Being diagnosed at 24, I wasn’t going to let it steal my life, but in a sense it has. I’ve always wanted to travel and before my diagnosis, I did. Now though, my dreams of traveling have diminished. A trip to do something nice will be amazing, as it may be the only one I get outside of traveling to a hospital.
This disease has affected the last eight generations of women in my family. It has been a constant struggle, and my mother is the only woman to make it past 40 years old. That was a blessing! Making it past 30 years old was a big motivator for me to apply for a journey! I wasn’t supposed to walk again or live to 30, so that was a big milestone for me to celebrate.
My Health
Daily Challenges
Dexterity – relearned how to use right hand
Walking – relearned how to walk
Ongoing Health Issues
Unable to regulate body temperature
Numbness
Severe ovarian cysts + Migraines
Major Procedures
Currently on chemo
Full left kidney removal + partial right kidney removal
In February 2020, we approved Kylie’s application, but sadly, their excitement was abruptly interrupted a month later when the COVID-19 pandemic began. The Being Positioned travel program re-opened two years later, but Kylie and her spouse, Melissa, received devastating news. Right as the world was returning to normal, they found out that they both needed brain surgery. With Kylie already having VHL and Marissa suffering from a serious medical condition, this was almost too much to take. After a few surgical complications, we decided to delay their journey another year so that they could fully recover and enjoy the experience.
“Over those 3 years, they sent us lots of fun things in the mail related to traveling such as world puzzles, snack boxes from around the world, date night packages as well as a mini cupcake set full of delicious mini cupcakes after my surgery! Being Positioned was there in our corner the whole time and gave us the trip of a lifetime to think about during the worst year of our lives!”
After the hardest year of their lives – they were desperate for some fun! They live in Nebraska and wanted to travel in February, so we knew escaping the cold was a must. We love encouraging our recipients to “play” and do things that help them feel like a kid again. Kylie and Marissa are big Harry Potter fans and said going to Universal Studios in Orlando was high on their bucket list. A Florida vacation sounded like the perfect fix, but they wanted a balance of adventure and relaxation. We decided to split their trip into two parts to give them the mix they were hoping for. A few days in Orlando, filled with theme parks and swimming with dolphins, followed by a few days in Clearwater, where they could relax on the breathtaking white sands beach.
“When I read about Being Positioned I thought what a wonderful organization! They have done great things for people, I will try this myself! Being chosen for a journey means the world to me. Now I can continue my dreams of traveling and seeing new things, and take a long overdue honeymoon, that really isn’t possible otherwise!
FINALLY, in February 2023 we departed on our flight to Paradise! We chose to go to Florida to the Orlando / Clearwater area.”
Travel Docs
Being Positioned created a 6-day itinerary for Kylie to eat, explore, and sightsee in sunny Florida.
We did a lot of sightseeing, went to Universal Studios, played mini golf and fed baby alligators at the golfing place, saw the ocean, swam and ate some delicious food including my favorite dish Snow Crab Legs, saw the Titanic Museum, attended the “Outta Control Dinner Show” at the Wonderworks building, plus many more exciting things!
“We had a full itinerary packed with everything we could dream of. My second favorite animal is a dolphin, so Being Positioned made it possible for me to go to Discovery Cove and swim with the dolphins! I met my new best friend Maui that day. That was by far my favorite part of our trip!”
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Completed Activities
Discovery Cove Dolphin Swim Experience • Universal Studios • Clearwater Beach • Sunset Celebration Pier 60 • Congo Mini Golf • Mini Car Adventure • Titanic: The Artifact Exhibition • Outta Control Dinner Show
“It has helped both my spouse and I relax since being home and being able to see there is still positive outside all the negative that comes with these diseases! It is easy to let the weight of everything take over the big picture of things sometimes. We can never thank you enough Being Positioned! You guys and what you do for people is amazing!! Keep rocking it! We love you!”
This whole experience was so relaxing, mentally, emotionally and physically. Yes, we moved and did activities that involved a lot of walking, but the fact of being away from everyday life, having everything taken care of and just being able to breathe for a second was more than we could’ve asked for. Our money, time and energy are spent on doctors and hospitals so to be able to take this trip, carefree and relax after 10 years of not being able to since being diagnosed was a blessing we could’ve never imagined!
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.
I was diagnosed in 1992, when I was 25. A biological relative contacted me and informed me of a hereditary genetic disorder that I may have inherited. That was the first time I had ever heard of Neurofibromatosis Type 2 aka NF2. I was not raised with my biological family. I am a third generation NF2’er. It started with my grandfather, then my mother, and both my siblings. I was tested and VOILA! The rest is history.
Fast Forward to 2022. I am 55 years old, I have had 4 brain surgeries. I am deaf. I am legally blind. My mobility is impaired. I have numerous spine tumors. I have had my face reconstructed, my eyelids and my vocal cords “corrected” with implants. Also, random skin tumors at random places all over my body.
The emotional part is exhausting. Constantly adapting. Repeatedly adjusting to a new normal. By definition, NF2 is a progressive disorder. So, it is going to get worse. Or it wont. Or it will. That is an enormous burden to carry. Always another test, another scan, always hoping for “stable” test results, but waiting for the other shoe to drop.
“The heirloom of NF2 is bilateral Acoustic Neuroma / Vestibular Schwannoma tumors, which almost always result in deafness. I remember a time when the thought of someday being deaf seemed like the end of the world, and I just could not wrap my brain around it. In the big picture, and the long list, of losses that you can suffer with NF2, losing your hearing seems minor now.”
The finances are no joke either. All the specialized equipment, both for communication and mobility: not cheap! All the dry eye maintenance supplies, none of that is covered by insurance either.
The pandemic has been horrible. The whole mask issue is a nightmare to most late deafened people. Forget lip reading. I don’t even know you are talking to me unless I can see your lips. Since 2020, I have been in one store. Only one. I have been to numerous doctors appointments though! Being “high risk” is not a joke. Isolation. It’s hard. It has changed me a lot.
My Health
Daily Challenges
Fully deaf + legally blind
Dizziness, headaches
Swallowing problems
Severe dry eyes
Ongoing Health Issues
Atrophy, impaired mobility, loss of balance
Numerous spine tumors
Skin tumors
Major Procedures
4 brain surgeries
Eyelids + vocal cords “corrected” with implants
Facial reconstruction surgery + throat surgery
Total Surgeries: 8
Making Travel Plans
When KC applied for a Being Positioned journey, she was unsure if she could fully participate since she is deaf, legally blind, and has numerous mobility issues due to her NF2. Her first request was that we provide a local travel companion to guide and support her. With those challenges in mind, we focused on a fun-filled destination that was mobility friendly without compromising her safety. KC mentioned that she used to love going on road trips but hasn’t been on one in years because of her health. During our conversations, we discovered she is a big fan of fall foliage. Because we knew KC has a birthday in October, it became clear we needed to send her and the love of her life, George, on an unforgettable trip near her special day.
Since there is nothing more magical than a road trip through the Smoky Mountains during peak leaf season, we suggested Tennessee. Once KC read about all the exciting activities found in the Blue Ridge Parkway, we all agreed that Tennessee was the perfect place to visit.
As we began planning her trip, we could tell KC’s confidence grew when she sent us a surprising email.
“I don’t want a host [local travel companion] anymore. If we have your guidance and know in advance where we are going….no problem. We can do this – it will be the trip of a lifetime!”
It was so special for our team to witness KC’s long forgotten sense of adventure awaken even during the planning of her trip.
“Never in a million years did I really think I’d be chosen for a Being Positioned journey, but here we are, and life is good! I think about my journey all the time! We’re going on a road trip through the Blue Ridge Parkway and ending in Gatlinburg/Pigeon Forge.”
Travel Docs
Being Positioned created a 6-day itinerary for KC to eat, explore, and sightsee in beautiful Tennessee.
My journey has already given me a huge blast of self-esteem, and I haven’t even gone anywhere yet! Also, I’m just happy and excited and looking sooo forward to my journey. I can’t remember the last time I was looking forward to something. I’m hoping my journey gives me a new blast of energy. I feel burned out and jaded. I have medical tests coming up. Sigh. Normally, I would be dwelling on those tests and what the results may show. But this time I have the nice distraction of my Being Positioned journey!
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Completed Activities
Blue Ridge Parkway Road Trip • Virginia Safari Park • Mabry Mill • Ober Aerial Tramway • Jayell Ranch: Zip Lining + Horseback Riding • Couple’s Massage + Facial • Parrot Mountain Garden of Eden • Moonshine Mountain Coaster
“In my past, road trips were my thing. Just one more thing I figured I would never do again. But I was wrong. With the proper support, planning, and embracing the adaptations available to me, nothing is impossible! Everything about my Journey, was stepping out of my comfort zone. And I’m so glad I did! I feel recharged and ready to face whatever the future brings. Empowered, Confident, Independent, ABLE.”
Last night my neighbor’s had their annual Halloween bash/potluck. George was sick in bed, but I already said I was bringing chili. So, I went without him and it was fine! I never do stuff like that anymore. Ever. Before I went, George kept asking me: ‘Are you sure you want to go alone?’ I told him yes! I am embracing my newly found self-confidence. You can blame Christina! Haha.
Some of my peers couldn’t understand why anyone would donate to a “Journey” when we need a cure. Valid concern. However, what good would a cure be to the body, if the soul is broken? Being Positioned is a worthy cause. I am excited for the next BP’er. Who will it be? Where will they go? I hope they find their adventure. Never give up. Ride or Die!”
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.
