VON HIPPEL-LINDAU SYNDROME

Destination: New Orleans

Travel Year: 2022

My Story

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.

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.”

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.

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