VON HIPPEL-LINDAU SYNDROME

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.

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

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

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

After a devastating year marked by unimaginable trauma and loss following her diagnosis, Morgan made a brave decision—she applied for a Being Positioned journey, hoping for a moment of peace amidst the overwhelming stress of her new reality. She and her husband desperately needed a reprieve, and our team felt privileged to create a romantic, relaxing escape for them.

From the start, Morgan had one non-negotiable: her journey had to include a beach! With so many stunning options across the U.S., we set out to find the perfect blend of serene beauty and the artsy, cultural vibe Morgan longed for. The Miami/Fort Lauderdale area stood out with its vibrant art scene and miles of breathtaking beaches, making it the ideal destination.

We wanted to make sure the trip was as rejuvenating as it was memorable, so we planned a romantic rooftop dinner, a couples massage, and of course, plenty of beach time. Morgan also couldn’t wait to dive into Miami’s art scene, with visits to iconic spots like Wynwood Walls and the Historic Art Deco District. And what better way to complete their escape than with a scenic boat trip, soaking in the ocean views?

Being Positioned created a 7-day itinerary for Morgan to eat, explore, and sightsee in the beautiful Miami/Fort Lauderdale area.

Our meals were so wonderful, but I think our favorite place we got to eat at was Olivia’s Restaurant and Rooftop. It was a beautiful roof top view during sunset with delicious Italian food. My favorite art museum we went to was by far Wynwood Walls. It was an incredible display of multiple graffiti artists, each with multiple pieces on display. Each artist was so different in style which made the whole gallery such a great experience. We loved it. My favorite moments were sitting on the beach relaxing listening to the waves crashing onto the shore. It was truly my definition of peace. It was so wonderful to get away from the reality of our everyday lives and not have to worry about all the doctor’s appointments.

Beach • Riverboat Dinner Cruise • Wynwood Walls • NSU Art Museum • South Beach • Las Olas BLVD • Rooftop Dinner • Massages

This adventure we were lucky enough to get to experience showed me that just because of my diagnosis, we don’t have to stop living and enjoying life. We are both incredibly grateful for Being Positioned and what they have done for us. Thanks to them we were able to not only leave behind our stress but also gave us the opportunity to create new memories that seemed like a dream come true.

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.

VON HIPPEL-LINDAU SYNDROME

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.

• Dexterity – relearned how to use right hand
• Walking – relearned how to walk

• Unable to regulate body temperature
• Numbness
• Severe ovarian cysts + Migraines

• 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

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.

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.

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!

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

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.