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Voices of the NIH Community
“I never knew how it was to feel free”
Twins Alexis and Noah Beery were born with a rare neurological disorder that left them profoundly disabled. After years of research and advocacy by their mother, and finally whole genome sequencing at an NIH sequencing center, the cause of their illness was accurately diagnosed. Now healthy, 18-year-old Alexis talks with her mother Retta Beery about her long diagnostic odyssey, the miracle of sequencing, and the happiness she now finds in running.
Alexis Beery: I wanted to play on the playground, you know I wanted to do sports; I wanted to do so much more. My first five years of life was just the hardest experience ever.
Retta Beery: You know I just remember watching Zach as your--
Alexis Beery: But I just couldn’t physically do things I wanted to do and going through that--
Retta Beery: --big brother and how he would protect you guys and watch over you.
Alexis Beery: I wouldn’t be able to sit up so then Zach would always be behind me sitting me up and keeping me from falling all the time.
Retta Beery: You had gotten to the point at age five and a half we were actually looking at wheelchairs and feeding tubes; Alexis, we never thought you would live independently but after four years of research, I came across an article that spoke of a different disorder that mimics cerebral palsy, but it’s treatable with a medication. And then we started you on the drug L-DOPA and that next day you went from this little girl that was unable to do anything to this girl that was running around playing and doing things that we never thought possible.
Alexis Beery: That day shaped my whole life and my whole future because that day I found my ability to run. I was just running up and down the playground and no one was able to stop me. I never felt that way before; I never knew how it was to feel free, to feel like I was just broke out of these chains that’s just been keeping me down and everything.
Retta Beery: And we really thought we had solved this mystery.
Alexis Beery: And then all of a sudden late one night, I just collapsed. I couldn’t breathe. My face was turning blue.
Retta Beery: And what ended up happening is you had that breathing nightmare and then 18 more months of struggles for breath, we had to pull you from every sport. You were no longer able to walk down the street without needing a treatment, a breathing treatment and then in 2010, I heard about the advances of genomic sequencing and we ended up engaging in this project with Baylor College of Medicine and the Human Genome Center.
And three months after you guys had your blood drawn, they actually found the mutation responsible for your neurologic disorder and we were treating half of it with the L-DOPA, but we ended up adding an additional amino acid, something that you can get over-the-counter, and you started breathing again.
Alexis Beery: I just couldn’t wait to get back running again and I was able to go back and run track.
Retta Beery: By the way, you will be attending Biola University in the fall, running collegiate track. Congratulations Alexis, I’m so proud of you.
Alexis Beery: Thank you, mommy because without you, I wouldn’t be here today; I wouldn’t be alive. You’re the one who saved my life and that saved Noah’s life and I love you so much.
This page last reviewed on July 25, 2016