By TONY GUERRERO
Hays Post
For three years, Amy Baltodano dealt with unexplained symptoms before doctors diagnosed her with a rare and fatal illness.
"It was so overwhelming and sad, but I was happy that I finally knew what was going on," Amy said.
Huntington's disease is a genetic condition that causes the progressive breakdown of nerve cells in the brain.
44-year-old Amy is a single mother in Hays and a former programmer at Eagle Radio who is now dedicated to raising awareness about her illness.
May is Huntington's disease awareness month.
Amy is the only person in Hays living with the fatal disease that she is aware, she said.
Amy began experiencing symptoms such as movement problems, trouble speaking and difficulty understanding before her primary doctor suspected Huntington’s disease. She was officially diagnosed on Nov. 15, 2024.
"It causes impairment of the ability to function like a normal person. Opening stuff and bottles is really hard for me to do. I need to have my daughter help me," she said.
Amy also deals with involuntary jerking movements known as chorea, along with anxiety, depression and muscle pain. She remains under the care of her primary doctor and neurologist.
Amy previously underwent speech therapy and now participates in occupational and physical therapy. She also takes medication to manage her symptoms and wears a vest to help control her movements.
Amy could not continue working as her symptoms worsened and fatigue set in. Fortunately, she isn’t facing the journey alone.
"My parents are helping out with rent, bills and for my daughter's education," she said.
Amy is adopted and has no contact with her biological parents, which has made it harder for her to trace the origins of her Huntington’s disease. Since the condition is inherited, the lack of a known family medical history has left many questions unanswered.
She wishes she had looked for her birth parents, but emphasized that she deeply loves and appreciates her adoptive parents, Allen and Rosalie Schmeidler.
"Amy's been a trooper. Her dad and I are so proud of her for the way she's handling this," Rosalie said.
Amy received her diagnosis on Allen’s birthday, making the news especially emotional. While the family was initially shocked, they felt relieved to understand what was happening.
"I was shocked but kind of relieved to finally know what was actually wrong," Allen said.
Rosalie and Allen said their daily routine now revolves around Amy’s needs. They regularly take her to physical and occupational therapy, and travel to Kansas City every three months for neurology appointments.
Amy said her 15-year-old daughter, Mia Baltodano, is her greatest source of joy and support, even though discussing the diagnosis with her has been difficult.
"She's the best person ever. I love her so much... her and my family have been so supportive," Amy said.
Not knowing her biological family history has created uncertainty about her daughter’s potential risk, as Amy has no way of knowing which side the gene came from. According to the Mayo Clinic, a child of a parent with Huntington’s has a 50% chance of inheriting the gene that causes the disease.
Amy is determined to raise awareness about the illness in her free time, especially in a community where the condition is not well known.
Amy said she and her family have begun preparing for the future, including arrangements for Mia's care and planning Amy's funeral as a precaution.
"It's really depressing for Allen and me," Rosalie said. "You always thought your children would outlive you. She still may, but now we have to think of if we're not here, we have to have everything in place for her."
Amy said, "I really have nothing to lose now, so I'm just trying to live my days to the fullest... and watch a lot of reality TV. I can't get away from those housewives."
Rosalie said when Amy is in public, people often misunderstand or even mock her involuntary movements, not realizing they are caused by a medical condition. Sometimes, it comes from adults.
The family relies on their faith to navigate through the difficulties. Rosalie said she believes God gave Amy this challenge for a reason and trusts that she has the necessary strength.
"He blessed us with Amy. He knew that she was a warrior who could handle this and be a fighter for this cause," Rosalie said.
Despite the disease’s symptoms and fatal nature, Amy remains hopeful and focused on helping others identify early signs. She continues to stay alert for her daughter’s future.
"I'm nervous for her," Amy said. "At least we'll know if something does happen. We'll know the signs to look for that I didn't know."
Amy recommends the Huntington’s Disease Society of America as a resource for learning more about the condition. She also welcomes questions through her Facebook and said she’s happy to respond if she can.
The family thanks their doctors, therapist, neurologist, HaysMed, Northwest Kansas Area on Aging, and extended family and friends for supporting Amy's journey.