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Tag: Journey Florida

Morgan

VON HIPPEL-LINDAU SYNDROME

Destination: Miami

Travel Year: 2024

My Story


In moments my entire world had changed. During my 20-week prenatal visit, my OBGYN admitted me to the hospital and sent me in for a Brain MRI because my symptoms were way past normal pregnancy symptoms. After the MRIs and a bunch of tests were completed, I was informed I had a large tumor on my brainstem, with cysts all down my spinal cord, in my kidneys and pancreas. They diagnosed me with a rare genetic disease called Von Hippel-Lindau disease (VHL).

My family and I had never heard of it before and were completely in shock. My doctors informed me that pregnancy hormones intensify this disease which is why my symptoms had gotten as bad as they did. After my Brain surgery to remove the tumor, we were relieved that both my baby and I had made it successfully through surgery. But, I had a number of complications that kept me in ICU for four long months. My eyes were crossed, I was having throat issues that were causing breathing problems and a lot of numbness in several places. A little less than a week later I caught pneumonia, and my lungs gave up and wouldn’t oxygenate.


“I was placed on ECMO, which is a type of life support that did the work for my lungs by oxygenating my blood. I also had a tracheostomy done and was connected to a ventilator. While on ECMO, our baby, Catie, passed away unexpectedly and for unknown reasons. I had to have a c-section the next morning. We were all completely devastated.”


After relearning how to walk and 4 long months in the hospital, I was released. My life has been turned upside down and there’s nothing I can do to control or change it. It’s hard to accept that I’ll never be the same person again. Scans, testing, and surgery will always control my life. But I always try to remind myself that it’s not what should stress me today. So, for today I will enjoy being with my husband, family, and friends.
Getting selected for a Being Positioned journey has been a huge blessing in my life. When I heard about this program and their mission, I was blown away by it. Thinking of the future has become a very scary rabbit hole, but going on this trip has given me something to look forward to. My diagnosis has made me realize how short life is and how I never want to take anything for granted. With constant appointments and medical bills, I feel like VHL has taken over everything. I want us to still be able to have fun and enjoy life. This trip is giving us the ability to live again and not have to think or worry for a bit about our reality. It’s an escape, and I know we will enjoy and cherish every moment of it.

My Health


Daily Challenges

  • Vision issues (double vision + eye shaking)
  • Vertigo
  • Larynx spasms
  • Coughing fits

Ongoing Health Issues

  • Breathing problems
  • Sleep apnea (damage from surgery)
  • Nerve pain from spinal cyst

Major Procedures

  • Brain surgery
  • C-section
  • ECMO cannulation (twice)
  • Tracheostomy

    Total Surgeries: 5

    Each person diagnosed with Von Hippel-Lindau Syndrome 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