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Tag: Von Hippel-Lindau Syndrome

Justin

VON HIPPEL-LINDAU SYNDROME

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

        Kylie

        VON HIPPEL-LINDAU SYNDROME

        Destination: Florida

        Travel Year: 2023

        My Story


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        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
          • Frontal lobe brain tumor removal (caused seizures)
          • Multiple spinal tumors removed
          • Brain stem/top of spinal cord tumor removal

          Total Surgeries: 8

          Making Travel Plans


          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.

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          Destination 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.

          Learn More

          Continue reading

          Bethanie

          VON HIPPEL-LINDAU SYNDROME

          Destination: New Orleans

          Travel Year: 2022

          My Story


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          My name is Bethanie and I’m a 36 year old single mother of two wonderful daughters. I’m a strong woman who was diagnosed with a rare genetic condition called Von Hippel-Lindau Syndrome (VHL). This condition is hereditary. It was passed from my father to me, then passed to my youngest daughter.

          I was a happy, healthy, mother-to-be walking to my 7-month prenatal check-up. My midwife noticed I was experiencing symptoms not consistent with pregnancy, so she sent me to get a brain MRI. Two large tumors were found in my cerebellum.

          Completely terrified, worried, and unprepared for what was coming next, I was rushed to the hospital via ambulance for an emergency craniotomy (brain surgery). The doctor successfully removed both tumors without harming my unborn child. Words can’t describe the feeling of waking up to the sound of my baby’s strong heartbeat. My daughter was born two months later – full-term, healthy, and negative for VHL.


          “In the past twenty years, I’ve had numerous surgeries, MRI/CT scans, EKGs, X-rays, and blood work to manage my condition. I’ve had four brain surgeries, a shunt placed in my brain, spinal meningitis as a result of brain surgery, and three kidney surgeries to remove renal cell carcinoma.”


          The cancer took half of my right kidney. I’ve also had a tubal ligation, spine surgery, and lots of eye procedures. The countless eye surgeries/procedures took the vision in my left eye and now it’s working on my right. My most recent surgery was to remove my left eye because it was causing severe pain. I’m getting a prosthetic eye placed in a few weeks, once I heal from the surgery.

          My Health


          Daily Challenges

          • Legally blind: my vision is 20/200
          • Retinal detachment from optic tumor

          Ongoing Health Issues

          • Impaired motor function and dizzy at times from surgeries

          Major Procedures

          • Currently on chemo
          • 3 brain surgeries + spinal meningitis
          • 3 kidney surgeries + partial removal of right kidney
          • Cataract surgeries
          • Left eye removal + prosthetic eye placement

          Total Surgeries: 18

          Making Travel Plans


          When Bethanie’s application was approved, the Being Positioned team worked closely with her to match her personal health requirements with her bucket list. Since Bethanie has progressively lost her vision from VHL, she needed a destination that invigorates her other senses. A place with powerful music and flavorful cuisine options was a must. Also, Halloween has always been her favorite holiday. So, we realized that selecting a city with a spooky history was key. Quickly, we determined that New Orleans with its soulful music, globally inspired dishes, and ghostly charm was the perfect match to bring Bethanie’s dream to reality. And what better month than October to send her to the city that knows how to celebrate Halloween to the fullest.

          “I like exploring different cultures, going on tours, trying new foods, and watching shows – like comedy, magic, acrobats, and mystery. I love animals and going to the beach, but I haven’t had the opportunity to travel.”


          “Going on my Being Positioned journey will be a much needed break from worrying about mine and my daughter’s health. It’s going to be amazing to have some time to relax and enjoy life for once. I’ve been in and out of hospitals dealing with one thing or another, and can’t afford a vacation because of medical expenses. Plus we recently had to make my house wheelchair accessible for my daughter, which has been very expensive. Raising two children alone is hard, especially when you add the medical challenges. Life is so short, and I want to spend the time I have left going on adventures, experiencing different cultures, foods, and beautiful views.”

          “I’m going to New Orleans for my journey and I can’t wait to experience the culture, go on food tours, visit haunted mansions, and other oddities. I really want to take a cooking class and do a lot of sight seeing.”

          Travel Docs


          Being Positioned created a six-day itinerary for Bethanie and her mom to eat, explore, and sightsee in beautiful New Orleans.
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          Destination New Orleans


          I was one of the lucky ones to have a life long dream come true. In October, my mother and I were given the trip of a lifetime. I couldn’t believe it, I would be spending 6 amazing days in New Orleans, LA. There is so much history and culture in that little part of this beautiful country. I was submerged in the sad stories of all that happened during the hurricane, there was so much I have not had the opportunity to experience before this adventure. The people were so welcoming and I was able to relax without stressing out about appointments, tests, and doctors.

          “On my journey I enjoyed everything – from the delicious foods that I had the joy of learning how to cook, to the amazing architecture. I’m so grateful for everyone at Being Positioned and all of the generous people who donated, so all this could be possible. Thank you to everyone.”


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          Completed Activities


          New Orleans City + Cemetery Bus Tour • Cafe Du Monde • Cooking Demonstration + Meal • Steamboat Evening Jazz • Dinner Cruise • Swamp + Bayou Sightseeing Boat Tour • Swedish Massages • Dead of Night Ghosts + Haunts Bus Tour • French Quarter Carriage Ride


          “The people were so welcoming and I was able to relax without stressing out about appointments, tests, and doctors. On my journey I enjoyed everything – from the delicious foods that I had the joy of learning how to cook, to the amazing architecture. I’m so grateful for everyone at Being Positioned and all of the generous people who donated, so all this could be possible. Thank you to everyone.”

          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