Grown Here at Home: Alpaca farm becomes safe haven for family navigating daughter’s rare disease
CATAWBA, Va. (WDBJ) - If you’ve ever been to the Salem Farmers’ Market, you might have seen the Schneider family. Donald and Stephanie own Pacaberry Farm in Catawba. The farmers’ market has always been a fun time for the couple and their two children. But a few years ago, just another Saturday at the market turned into one they’ll never forget.
“They told me that they thought she had Ataxia-Telangiectasia over the phone on a Saturday when I was at the market in 2018. And I’ll never forget these doctor’s words. She said, but don’t look it up. It’s a scary disease or something like that,” Stephanie said.
“I looked up what it was and I just couldn’t handle it and I took a step back. The gentleman I was with at the booth, he stepped up and I took a step back, I put my hand up and I walked away. He stepped up and took care of anything that had to be taken care of,” Donald explained.
Dr. Liana Rosenthal is the Director of The Johns Hopkins Ataxia Center, which sees 200 to 300 patients a year. She says Ataxia is a rare disease with four to six per 100,000 people diagnosed overall.
“Ataxia is an incoordination. The type of ataxia that we deal with is an incoordination due to problems in the cerebellum. It is a specific type of balance and walking problem. Your gate tends to be wider, so your feet stand farther apart. people will slur their speech a little bit; there’s also some very characteristic eye movement changes that impact the way you look from one target to the next,” Rosenthal explained.
Depending on the type of ataxia someone has, cases can range from moderate to severe. Stephanie says from the time Olivia was born she knew something wasn’t right. Oliva had several ear and sinus infections. At one point she was going to the doctor once a week. Eventually they went to see an immunologist.
“She fell into her. She just knocked into her. And this doctor looked at me and said, how long has she been like this? I said her whole life, since she could walk. She said, have you pointed this out and I said, yes, I’ve pointed this out and no one will listen. It took some really savvy doctors to realize that this is what it was because a lot of times, A-T can go misdiagnosed for years,” Stephanie said.
Olivia sees several specialists. Some are local, but they also travel to UVA as well as The Johns Hopkins Ataxia Center.
“A lot of what we do then is supportive care or symptomatic therapy, where if someone has a symptom we address it,” Rosenthal said.
This may include physical therapy, exercise, or medication. Olivia’s therapies are time-consuming.
“You’re looking at a dozen hours, not including drive time, just as a base item, and that’s hard,” Donald said.
Stephanie said, “She gets fatigued very easily, but we’re supposed to watch for even more fatigue as a sign of cancer. We have to keep her lungs healthy and safe, so she can’t even get the regular flu because any damage that her lungs incur could speed up the process of her disease. It literally affects so many parts of her.
It’s a lot for a little girl to go through. Donald and Stephanie say explaining the depth of this disease to their daughter will take time.
“She is aware she has to see many doctors. She does ask why she has to see the doctors. We try to be as honest with her as possible without scaring her,” Stephanie said.
But despite all the doctors’ appointments, therapies, and at times frustrating moments, they have each other.
“I appreciate my family more than anything in the world. I love the moments I get to share with them. Every moment’s important,” Stephanie said.
And for that, they’re grateful.
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