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

Making Travel Plans

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?

One year to the day after her diagnosis, Morgan sent us a message that brought our team to tears: “A year ago today, I was lying in a hospital bed. Today I’m lying on a beach chair. Thank you!” Moments like these remind us of the incredible impact of these journeys—transforming heartbreak into hope.

“Florida was a dream! We got to enjoy the beautiful East coast beaches, the art district in Miami, different museums in Fort Lauderdale and an amazing massage at the NOW spa. Not to mention the amazing food!”

Travel Docs

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

Destination Miami + Fort Lauderdale

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.

Completed Activities

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

“We got to really leave all our worries home and just focused on being present in the moment and we loved every minute of it. Being Positioned gave us the biggest gift we could have asked for. They not only gave us peace, but it gave me hope. ”

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.

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