Grown Here at Home: Family farm becomes safe place for daughter battling rare disease

As a family in Catawba is navigating their daughter’s unexpected diagnosis of a rare disease, their alpaca farm has become quite the special place for them.
Published: Jul. 25, 2022 at 7:46 AM EDT
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CATAWBA, Va. (WDBJ) - It’s news no parent ever wants to hear. In 2018, Donald and Stephanie Schneider’s daughter, Olivia, was diagnosed with Ataxia-Telangiectasia, or A-T.

“It is a very complicated multi-faceted neurological disease,” Stephanie said.

As you can imagine, the shock of the news left them with many questions.

“What does this mean for her? What does this mean for us? What does this mean for the family?” explained Donald.

“We want to be able to help people with what is next, as best as we can figure out,” said Dr. Liana Rosenthal, director of The Johns Hopkins Ataxia Center, where Olivia receives care.

“I try to empower patients about the things they do have control over. Here are the things that you can do to make things as good as possible, to make things better than they would be otherwise,” Dr. Rosenthal explained.

Having A-T can be isolating. The Schneiders’ alpaca farm, Pacaberry Farm, has been such a blessing to them.

“I’m glad that we’ve been able to have this farm and give them these opportunities to just be free,” Stephanie said.

Olivia is ready for any adventure on the farm. There’s nothing stopping her.

“One of her abilities, which is absolutely incredible, and I’m in awe of sometimes, is her ability to adapt,” Stephanie said.

“She will try, and try, and try again. If it doesn’t work, she adapts, and moves on and tries one more time,” Donald explained.

Stephanie said, “People will see her playing and not realize that she is really wobbly or that she has these issues because she’s an active kid, and watching her you just think she’s an active kid.”

“We’re trying to always be optimistic,” Donald said.

“She knows there’s something that she’s a little different, but I also don’t try to treat her any differently. She still gets to do the things her brother gets to do, maybe she does them a little differently,” Stephanie explained.

Donald and Stephanie are involved in fundraising efforts for the A-T Children’s Project, a non-profit that supports research projects, life-improving therapies, and a cure for the disease. Dr. Rosenthal says there’s promising research happening right now.

“The things that give me the most hope is there’s a lot of interest in developing new drugs and treatments for this area. I am hopeful for better treatments in the future. I am hopeful for treatments that slow the disease course,” she said.

After two years of living isolated due to the pandemic, Oliva was finally able to go on an exciting trip. Her wish to go to Disney and Universal Studios was granted through the Make-A-Wish Foundation. Stephanie says everyone’s kindness brought her to tears more than once, and the experience was a breath of fresh air for the whole family.

“We want her to just live in the moment and enjoy her life as much as she can,” Stephanie said.

One thing is for sure; despite all she’s going through, Olivia is truly something special.

“She’s kind, she’s brave, and I think she’s wise beyond her years. She is small, yet mighty, she really is,” Donald said.

No matter what Olivia may face in the future; Donald never wants his daughter to be afraid. So they’ll keep encouraging her to go after the desires of her heart. Olivia dreams of becoming a veterinarian when she grows up. They’ll keep fighting as they pray every day for a cure; and they’ll continue fanning Olivia’s flame to keep the fiery, spunky, and beautiful, spirit in her, burning bright.

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