Editor’s Note: This story was submitted to us by Angelina Olivera, the mom of a 14-year-old with Duchenne muscular dystrophy, and the sister of two brothers who died from Duchenne muscular dystrophy.

I spent much of my childhood in hospitals watching my brothers die from the same disease that is now slowly killing my teenage son, Ryu.

For most little girls, childhood was butterflies and birthday parties. But my memories are of tracheostomy tubes, leg braces, machines humming through the night and hallways with that awful antiseptic smell.

My mom fought for every bit of care my brothers received as Duchenne muscular dystrophy (DMD) destroyed their muscles until they could no longer breathe for themselves. This terrible disease stole their independence and, ultimately, their lives.

While other families made summer vacation plans, we followed complex medical schedules and tried to give my two brothers, Angelo and Antonio, the best lives possible before they passed away in their early twenties.

Years later, I got the diagnosis no mother wants. My son Ryu, now 14, has Duchenne, too. The pain is made worse, because I know exactly what’s ahead. I’ve witnessed the loss of mobility and ability to breathe. I’ve seen fear in the eyes of loved ones who know their fate.

But today, families like mine know that new treatments exist that could give Ryu and other DMD patients improved quality of life and considerably more time.

The financial burden of Duchenne is overwhelming. Wheelchairs cost tens of thousands of dollars. Accessible vans are even more. We spend a fortune traveling to specialists while also fighting for insurance coverage.

If even one piece of equipment breaks, you are suddenly faced with the twin nightmares of a child who cannot function without it and a replacement bill no ordinary family can pay.

For decades, organizations like the Muscular Dystrophy Association (MDA) helped carry families through the impossible financial hardship of Duchenne. It assisted with treatment costs for my brothers and helped Ryu, too.

Support systems like those offered by the MDA helped families stay afloat financially and emotionally by covering our doctor visits where Ryu spends an entire day with his medical team. Then one day, I was told we needed to pay a bill.

The MDA said funding had shifted from supporting families’s current expenses to research and drug development for patients of tomorrow. As painful as it was, we supported that decision and tried to work through our new financial reality.

We wondered if reallocating those institutional resources would really pay off.

Then, a rare moment of optimism: a gene therapy treatment for Duchenne. We hoped the financial sacrifices Duchenne families made for the sake of research panned out. After watching my brothers die, it was a miracle to hear there may finally be a treatment to slow DMD progression. Perhaps Ryu could become the man Duchenne never allowed my brothers to be.

That feeling didn’t last long.

Last summer, the FDA inexplicably restricted the only gene therapy treatment on the market for Duchenne. It did this even though the treatment improved muscle function in the overwhelming majority of patients receiving it.

The FDA may live in the land of theoretical risks, but my family faces real risks every day.

It should be up to us to decide which treatments are worth trying when living with a terminal illness. Bureaucrats must understand the reality of our lives is brutally different from theirs. While they debate treatment approvals in fancy meeting rooms, our children are wasting away in wheelchairs.

Duchenne does not pause while regulators insert themselves into decisions that are my family’s to make.

It continues its merciless march forward.

Ryu’s life expectancy is currently the same as my brothers’: early twenties, at best.

That pain is hard to describe. It’s like being told to keep your child alive long enough to reach the shore, only to watch the shoreline move farther away.

I have buried two brothers. We had a chance to stop history from repeating itself, and now many families fear that chance is slipping away.

The two top FDA officials who appeared to block most of the progress are now gone. New leadership will be appointed soon by President Donald J. Trump. To those appointees, I say this: Let families decide what treatments their loved ones can try — we know what real “risk” is. We live with it every day.

Be a partner, FDA, not an opponent, and give us the right to choose. The sacrifices we made yesterday must fulfill the hope of tomorrow.