EL PASO, Texas (KFOX14/CBS4) — El Pasoan Angelina Olivera has already buried two brothers after they were diagnosed with Duchenne muscular dystrophy.
Now, she is the full-time caregiver for her teenage son, Ryu, who has the same rare and progressive condition, and she is asking federal health leaders to move faster on treatments she believes could extend lives.
In a letter to FDA Commissioner Marty Makary, Olivera said families like hers are running out of time and urged the agency to speed up action on life-extending treatments for rare diseases.
She also invited Makary to visit her home to see what daily life looks like for families caring for children with complex medical needs.
Read the full letter below:
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“I’m welcoming him into our home to sit in our living room to see firsthand what it takes to take care of a rare disease child, all the equipment he uses just to keep him alive,” Olivera said. “I hope that seeing that he is able to make better decisions and hire someone who is going to put patients’ lives first because our children are dying.”
Olivera said the FDA’s next leadership decision could determine whether children like her son get more time and a better quality of life.
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