When Angelina Olivera cried out to God and asked why she had been called to help a family member walk the path of Duchenne muscular dystrophy for a third time, she received an answer that empowered her to put on the “full armor of God” daily.
The Texas resident lost two brothers, Angelo and Antonio, to Duchenne muscular dystrophy, and is now the full-time caretaker to her 14-year-old son, Ryu, who also has the terminal disease.
“My relationship with the Lord is the firm foundation I set my life upon, and what has given me the strength and the power and the might to be able to raise my son and care for him the way I do, but also to try and lift other rare disease families up as well,” Olivera told The Christian Post.
The mother said she used to ask God why He allowed this to happen to her a third time, but then God responds, asking her, “But why not you?”
“And so when I hear that, I just remember every single day I get up to put on the full armor of God, and I’m able to face the day,” she said.
According to the Cleveland Clinic, individuals with Duchenne muscular dystrophy typically experience the deterioration of skeletal and heart muscles, with their condition worsening over time.
Olivera said caregiving has been a central part of her life since childhood, when she helped her mother care for her older and younger brothers, who died at ages 20 and 22. She believes those experiences prepared her for raising her son.
“God allowed that to happen because He was shaping and forming this situation because He knew what my journey was going to be,” she said. “When my son was diagnosed, it was a heartbreak, but it was like, ‘I got this. I know what to do.’”
Ryu, now 14, lost the ability to walk at age 10 and relies on a wheelchair. Olivera said the transition came suddenly, describing it as though he could walk one day but could no longer stand the next.
Even though her husband works full time, he also helps Olivera care for their son, which the mother acknowledged can be emotionally and mentally difficult.
“One of the things that really is a hard pill to swallow every day is that I know the outcome,” Olivera said. “I’ve seen it happen twice. And so, it’s like every day you’re kind of dealing with anticipatory grief.”
Raised Catholic before later attending nondenominational Christian churches, Olivera said her daily routine begins with prayer and devotion.
“I have to start every morning with a daily devotion because it sets the tone for the day,” she said. “Because every single day with a child with a rare disease, it can feel like a battle.”
Medical care itself presents additional challenges. The family travels four hours every six months to visit specialists, incurring expenses for hotels, food and fuel.
One medication Ryu currently takes, a steroid treatment, carries a list price of $30,000 per month without insurance, Olivera said. Even with insurance coverage, the family’s remaining costs total approximately $2,000 each month.
Those experiences have fueled her advocacy efforts on behalf of patients who have the same condition as her son and two deceased brothers.
Olivera has publicly urged the Food and Drug Administration (FDA) to expand access to a gene therapy for boys like Ryu who are already in a wheelchair. Last summer, the family considered enrolling Ryu in a treatment called Elevidys, but they could not — the FDA has restricted such treatment to ambulatory patients.
The mother believes families living with Duchenne should have the ability to decide whether such treatments are appropriate for their children.
In April, the mother extended an open invitation to former FDA Commissioner Marty Makary to visit her home and witness firsthand what it is like to care for a child who has Duchenne muscular dystrophy. She later extended the invitation to acting FDA Commissioner Kyle Diamantas.
“Please, I welcome you into our home. I would love for you to come visit, sit and have dinner with us, see how difficult it is to even get through one evening,” Olivera said.
“Ryu at one point could lift his arms and feed himself. Ryu at one point could get himself in bed, he could brush his teeth, he could go to the bathroom by himself,” the boy’s mother and caretaker added.
Through her advocacy, Olivera hopes to raise awareness about the condition her son has and connect with families facing similar circumstances.
Ryu himself, she said, encouraged her to speak out.
“Mom, you have to do this for me,” he told her. “You have to do this 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: [email protected]. Follow her on Twitter: @Samantha_Kamman
