VON HIPPEL-LINDAU SYNDROME

Destination: California

Travel Year: 2023

My Story

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.

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.

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.

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