MONROVIA, Calif. – In the last five years, Claudia Little’s life changed dramatically when she was diagnosed with a fatal disease that took away some of her mobility and ability to speak clearly.
“I do get frustrated. But, I usually try to write something down. Sometimes, my husband can’t understand me so I’ll send him a text,” Little said.
Little’s husband travels for work most of the year. When she was diagnosed with Huntington’s Disease, her mother and her brother stepped in as her primary caretakers.
“The only thing she told me in the car when we left the doctor is, ‘Mom, how can I do with my kids? I cannot leave my kids they are so young.’ And I remember I said, ‘You don’t worry. You’re not going to be alone. We’re going to stay with you all the way,’” said Sylvia Munoz, Little’s mother.
Ever since Little was diagnosed her brother, Dorian Ovalle, and their mother vowed to do what they can for her and her children. Huntington’s disease has no cure. The disease affects about 30,000 people and leaves about 200,000 more genetically at-risk.
Currently, it takes about two years to receive treatment after someone like Little qualifies for social security disability. Ovalle said the disease can progress dramatically in that window. That is why he joined the Huntington’s Disease Society of America’s Los Angeles chapter as a board member and to advocate for Congress to pass the HD Parity Act of 2019.
“What the Parity Act will do is allow people to apply for social security disability much earlier and what that does is, it allows you to take advantage of often times caretakers. Because if you are not able to work and bring in the secondary income, maybe it’s a struggle for a family to have someone there physically because someone does have to be working to maintain insurance,” Ovalle said.
Little was denied her social security disability that would provide her the assistance her family needs. Her family plans to reapply.
“She deserve the help when she need it and she needs it right now. We really need it. And we’re going to look to make sure that everybody gets the help they need with [Huntington’s Disease],” Munoz said.
This disease has taken away Little’s independence, but her family is determined to be there for her in hopes of seeing more treatments and access to care for this disease.