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Month: October 2022

KC

Written by Garrett Nantz on .

NEUROFIBROMATOSIS TYPE 2

Destination: Tennessee

Travel Year: 2022

My Story

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I was diagnosed in 1992, when I was 25. A biological relative contacted me and informed me of a hereditary genetic disorder that I may have inherited. That was the first time I had ever heard of Neurofibromatosis Type 2 aka NF2. I was not raised with my biological family. I am a third generation NF2’er. It started with my grandfather, then my mother, and both my siblings. I was tested and VOILA! The rest is history.

Fast Forward to 2022. I am 55 years old, I have had 4 brain surgeries. I am deaf. I am legally blind. My mobility is impaired. I have numerous spine tumors. I have had my face reconstructed, my eyelids and my vocal cords “corrected” with implants. Also, random skin tumors at random places all over my body.

The emotional part is exhausting. Constantly adapting. Repeatedly adjusting to a new normal. By definition, NF2 is a progressive disorder. So, it is going to get worse. Or it wont. Or it will. That is an enormous burden to carry. Always another test, another scan,  always hoping for “stable” test results, but waiting for the other shoe to drop.

“The heirloom of NF2 is bilateral Acoustic Neuroma / Vestibular Schwannoma tumors, which almost always result in deafness. I remember a time when the thought of someday being deaf seemed like the end of the world, and I just could not wrap my brain around it. In the big picture, and the long list, of losses that you can suffer with NF2, losing your hearing seems minor now.”

The finances are no joke either. All the specialized equipment, both for communication and mobility: not cheap! All the dry eye maintenance supplies, none of that is covered by insurance either.
The pandemic has been horrible. The whole mask issue is a nightmare to most late deafened people. Forget lip reading. I don’t even know you are talking to me unless I can see your lips. Since 2020, I have been in one store. Only one. I have been to numerous doctors appointments though! Being “high risk” is not a joke. Isolation. It’s hard. It has changed me a lot.

My Health

Daily Challenges

  • Fully deaf + legally blind
  • Dizziness, headaches
  • Swallowing problems
  • Severe dry eyes

Ongoing Health Issues

  • Atrophy, impaired mobility, loss of balance
  • Numerous spine tumors
  • Skin tumors

Major Procedures

  • 4 brain surgeries
  • Eyelids + vocal cords “corrected” with implants
  • Facial reconstruction surgery + throat surgery

Total Surgeries: 8

Making Travel Plans

When KC applied for a Being Positioned journey, she was unsure if she could fully participate since she is deaf, legally blind, and has numerous mobility issues due to her NF2. Her first request was that we provide a local travel companion to guide and support her. With those challenges in mind, we focused on a fun-filled destination that was mobility friendly without compromising her safety. KC mentioned that she used to love going on road trips but hasn’t been on one in years because of her health. During our conversations, we discovered she is a big fan of fall foliage. Because we knew KC has a birthday in October, it became clear we needed to send her and the love of her life, George, on an unforgettable trip near her special day.

Since there is nothing more magical than a road trip through the Smoky Mountains during peak leaf season, we suggested Tennessee. Once KC read about all the exciting activities found in the Blue Ridge Parkway, we all agreed that Tennessee was the perfect place to visit.

As we began planning her trip, we could tell KC’s confidence grew when she sent us a surprising email.

“I don’t want a host [local travel companion] anymore. If we have your guidance and know in advance where we are going….no problem. We can do this – it will be the trip of a lifetime!”

It was so special for our team to witness KC’s long forgotten sense of adventure awaken even during the planning of her trip.

“Never in a million years did I really think I’d be chosen for a Being Positioned journey, but here we are, and life is good! I think about my journey all the time! We’re going on a road trip through the Blue Ridge Parkway and ending in Gatlinburg/Pigeon Forge.”

Travel Docs

Being Positioned created a 6-day itinerary for KC to eat, explore, and sightsee in beautiful Tennessee.

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Destination Tennessee

My journey has already given me a huge blast of self-esteem, and I haven’t even gone anywhere yet! Also, I’m just happy and excited and looking sooo forward to my journey. I can’t remember the last time I was looking forward to something. I’m hoping my journey gives me a new blast of energy. I feel burned out and jaded. I have medical tests coming up. Sigh. Normally, I would be dwelling on those tests and what the results may show. But this time I have the nice distraction of my Being Positioned journey!

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Completed Activities

Blue Ridge Parkway Road Trip • Virginia Safari Park • Mabry Mill • Ober Aerial Tramway • Jayell Ranch: Zip Lining + Horseback Riding • Couple’s Massage + Facial • Parrot Mountain Garden of Eden • Moonshine Mountain Coaster

“In my past, road trips were my thing. Just one more thing I figured I would never do again. But I was wrong. With the proper support, planning, and embracing the adaptations available to me, nothing is impossible! Everything about my Journey, was stepping out of my comfort zone. And I’m so glad I did! I feel recharged and ready to face whatever the future brings. Empowered, Confident, Independent, ABLE.”

Last night my neighbor’s had their annual Halloween bash/potluck. George was sick in bed, but I already said I was bringing chili. So, I went without him and it was fine! I never do stuff like that anymore. Ever. Before I went, George kept asking me: ‘Are you sure you want to go alone?’ I told him yes! I am embracing my newly found self-confidence. You can blame Christina! Haha.

Some of my peers couldn’t understand why anyone would donate to a “Journey” when we need a cure. Valid concern. However, what good would a cure be to the body, if the soul is broken? Being Positioned is a worthy cause. I am excited for the next BP’er. Who will it be? Where will they go? I hope they find their adventure. Never give up. Ride or Die!”

Each person diagnosed with NF2 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.

Learn More

Continue reading

Bethanie

Written by kbAdmin on .

VON HIPPEL-LINDAU SYNDROME

Destination: New Orleans

Travel Year: 2022

My Story

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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.

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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.”

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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.

Learn More

Continue reading