VON HIPPEL-LINDAU SYNDROME

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.

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.

• Legally blind: my vision is 20/200
• Retinal detachment from optic tumor

• Impaired motor function and dizzy at times from surgeries

• Currently on chemo
• 3 brain surgeries + spinal meningitis
• 3 kidney surgeries + partial removal of right kidney
• Cataract surgeries
• Left eye removal + prosthetic eye placement

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.

“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.”

Being Positioned created a six-day itinerary for Bethanie and her mom to eat, explore, and sightsee in beautiful 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.

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

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.