Nelson Co. Woman Reaches Out to Community for Help as She Battles Rare Disease
NELSON COUNTY, Va. (WVIR) - A Nelson County woman is turning to the community for support as she faces a unique struggle. From sight problems to paralysis, Drew Dettweiler's worsening symptoms have her facing an expensive surgery with doctors at the University of Virginia.
Despite all the odds Drew Dettweiler has kept a positive outlook on life, especially as she gets ready to overcome this next big hurdle.
If you asked Drew Dettweiler, she would say she lives a quiet and humble life. "You have to live being happy, and so I'm happy. I've changed my ways and I am just a happy girl - I've always been a happy girl but a lot of stuff has happened to me."
Drew and her husband Timothy live in Nelson County with their two young sons. Just over five years ago, she went to the University of Virginia Emily Couric Cancer Center because of double vision and left with a life-changing diagnosis.
"I have a rare phenomenon known to forty people in the world,” said Drew Dettweiler.
Drew has giant tumefactive perivascular spaces (GTPVS), meaning there are more than 200 cysts on the left side of her brain. She says only 10 people in the world experience ocular symptoms due to the rare disease, and she has experienced a constant headache since 2015.
"I used to be completely right-handed and now I'm completely left-handed. It’s been a ride,” said Drew Dettweiler.
Shortly after her diagnosis, her family's home in Schuyler burned to the ground in a devastating fire, taking all of their belongings with it.
"We had a house fire in our 1898 farmhouse that completely decimated our property, we rebuilt and its even better than it was but it was a struggle,” said Drew Dettweiler.
She and her husband Timothy both work at Dr. Ho's humble pie in north garden. He says even though they've had a lot of support, it’s been a rough couple of years.
"It’s just a lot of suspense and a lot of not really knowing and just hoping for the best,” said Timothy Dettweiler, Drew’s husband.
Now, as drew prepares to go through an intense surgery at UVA Medical Center this fall, she and her family are keeping high spirits.
"Helps us both I think being positive, trying to keep a positive outlook,” said Timothy Dettweiler.
"A lot of people would say ‘Why are you so happy?’, ‘What do you have to look forward to?’, but I'm like, every single day, every day the sun comes up or my sons come up so it's great,” said Drew Dettweiler.
Dettweiler says even with insurance her medical expenses are expected to be well over $10,000 for her surgery this fall.
If you are interested in donating, you can click here.