When Angelina Olivera cried out to God and asked why she had been called a third time to help a family on the path to Duchenne muscular dystrophy, she received the answer that would empower her to put on the “full armor of God” every day.
The Texas resident lost two brothers, Angelo and Antonio, to Duchenne muscular dystrophy, and is now a full-time caregiver for her 14-year-old son, Liu, who also has a terminal illness.
“My relationship with the Lord has been a solid foundation for my life and has given me the strength, strength and strength to not only raise and care for my son as I did, but also to try to uplift other rare disease families,” Olivera told The Christian Post.
Her mother said she often asked God why He would allow something like this to happen to her a third time, and God would answer, “But why not you?”
“So when I hear that, it reminds me that I can get up every day and put on the armor of God and face the day,” she said.
According to the Cleveland Clinic, patients with Duchenne muscular dystrophy typically experience a decline in skeletal and heart muscle strength, and symptoms worsen over time.
Olivera said caregiving has been central to her life since childhood, when she helped care for her older brother and her mother, who died at ages 20 and 22. She believes these experiences prepared her to raise her son.
“God knew what my journey was going to be and allowed it to happen because He was molding and shaping this situation,” she said. “When my son was diagnosed, it was heartbreaking, but I was like, ‘Okay, I know what to do.'”
Ryu, now 14, lost the ability to walk at age 10 and relies on a wheelchair. Olivera said the change came suddenly, one day she could walk and the next she couldn’t stand it anymore.
Even though her husband works full-time, she also helps take care of Olivera’s son, which her mother acknowledged can be emotionally and mentally difficult.
“One of the things that’s really hard to swallow every day is knowing the outcome,” Olivera said. “I’ve seen it happen twice, so it’s like dealing with unexpected sadness every day.”
Olivera, who was raised Catholic and later attended a nondenominational Christian church, said his daily routine begins with prayer and devotion.
“I have to start every morning with daily dedication because that sets the tone for the day,” she said. “Because every day spent with a child suffering from an incurable disease feels like a battle.”
Healthcare itself has additional challenges. The family travels four hours every six months to see a specialist, which incurs hotel, food and fuel costs.
Olivera said the list price for one of the medications Liu is currently taking, a steroid medication, is $30,000 a month without insurance. Even with insurance coverage, the costs for the family total about $2,000 each month.
These experiences are the driving force behind her advocacy work on behalf of patients with the same condition as her son and two deceased brothers.
Olivera publicly called on the Food and Drug Administration (FDA) to expand access to gene therapy for boys like Liu, who are already in wheelchairs. Last summer, the family considered enrolling Ryu in a treatment called Erebidis, but were unable to do so. The FDA limits such treatments to outpatient use.
The mother believes that families living with Duchenne should have the ability to decide whether such treatment is appropriate for their child.
In April, the mother asked former FDA Commissioner Marty McCulley to visit her home and see firsthand what it’s like to care for a child with Duchenne muscular dystrophy. She then invited Acting FDA Commissioner Kyle Diamantas.
“Please, we welcome you to our home. Please come and visit us and sit with us and have dinner. See how hard it is to even spend the night,” Olivera said.
“Ryu was able to raise his arms and feed himself at one point. Ryu was able to get into bed on his own at one point, brush his teeth and go to the bathroom on his own,” the boy’s mother and caregiver added.
Through her advocacy work, Olivera hopes to raise awareness about her son’s illness and connect with families facing similar situations.
She said Ryu himself encouraged her to speak out.
“Mom, you have to do this for me,” he told her. “I have to do it for other little boys like me. And thank you, mom, for giving me a fighting chance.”
Samantha Kamman is a reporter for The Christian Post. She can be reached at samantha.kamman@christianpost.com. Follow her on Twitter: @Samantha_Kamman
