Our daughter with AADC deficiency continues to defy the odds
Her resilience and determination have made the impossible possible
On Christmas Day in 2018, our lives changed forever when our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency. My wife, Judy, wondered if she’d ever hold our hands and walk along the beach like we’d dreamed.
Despite the dismal prognosis that befalls children with AADC deficiency, we decided to remain steadfast. We approached our situation with a growth mindset powered by inspirational stories.
One story that deeply resonated with us was that of Wilma Rudolph, a decorated U.S. Olympian who overcame polio to break three world records and win three gold medals in track and field at the 1960 Olympics. If she’d allowed her disability to define her, she never would’ve become the first woman from the U.S. to achieve this incredible feat at a single Olympic Games.
Rudolph’s story struck us, not just because of her incredible determination, but because it mirrored our dream for Rylae-Ann. We wanted our daughter to defy the odds and achieve the unimaginable, like Rudolph did — starting with something as simple yet profound as walking hand-in-hand along the beach.
We reminded ourselves that we’d never discover the extraordinary if we set typical limitations as our benchmark. By redefining our expectations, we could prove that the impossible was possible.
Walking on the beach
Rylae-Ann and her dad hold hands to watch the sunset during low tide. (Courtesy of Richard E. Poulin III)
Two years after gene therapy and daily teamwork by Judy and me, we finally fulfilled our dream of holding Rylae-Ann’s hand as we walked along the beach. Today, we are blessed to do this every day.
Rylae-Ann often runs from our grasp to explore and search as a young child is expected to do. Even as she darts away and we shout to warn her to be careful, we remember this is a blessing.
Judy and I continue to push Rylae-Ann to make even more remarkable progress. When asked what we want her to become, I always have the same line: We’re setting her up to have the choice to become president or an Olympic athlete if she chooses.
Running for a cause
Rylae-Ann still has a long way to go to achieve that goal. As much as we push her, part of us holds her back out of fear she may get hurt. Judy and I do our best to remind each other to give her space; sometimes Rylae-Ann reminds us.
At the end of November, Rylae-Ann’s school hosted an annual walk-a-thon to raise money for childhood cancer. Her first grade teacher had spent the week teaching the class about raising awareness and supporting causes. Last year, Rylae-Ann made it down the first stretch of the starting area and promptly took a tired seat with the clapping parents that lined the perimeter.
This was partly due to Rylae-Ann’s attention span, but also because she was still building strength and coordination to run. Judy figured that she’d push her to go a bit farther this year.
A bell rang to announce the start of the run. Judy was with Rylae-Ann to start the race, but Rylae-Ann quickly took off with her friends, laughing. This was a fantastic start to the event. As they passed the first stretch, Judy offered Rylae-Ann places to stop at the school’s café.
Rylae-Ann completes her first of five laps at her school’s annual walk-a-thon. (Courtesy of Richard E. Poulin III)
The average temperature in Thailand, where we live, is 85 F in November. This day was no exception. The sun shone with warm rays and minimal clouds to offer relief. Rylae-Ann’s determination spread across her eyebrows as she proceeded. At each step of the way, she showed no signs of slowing down.
She has attended Ruamrudee International School in Bangkok for three years. Everyone there knows her story well, including the cafeteria staff, cleaners, and security guards she greets every morning. At each turn, her classmates, teachers, and even the school’s staff cheered her on. Their support turned this race into a celebration of her resilience and determination.
As Judy and Rylae-Ann completed the first lap — 500 meters, or about 0.3 miles — Judy gave Rylae-Ann a special cheer, but Rylae-Ann wasn’t done. The same people who cheered her the first time around cheered even louder as she made it to the second lap. Judy followed close behind, snapping pictures in disbelief. If Judy’s coaxing to grab a seat at the school café had worked, we wouldn’t have realized what was possible.
Rylae-Ann continued and didn’t stop. The warm November sun beamed down, and the cheers of her supporters seemed to carry her forward with each step. She completed five laps that day — well beyond what anyone, except Rylae-Ann, expected.
Our journey has taught us that the impossible becomes possible when courage triumphs over fear and determination over doubt. Watching her walk, run, and achieve what once seemed unimaginable fills us with gratitude, hope, and a renewed sense of purpose. When we hear Rylae-Ann’s laughter carried on the salty breeze during a walk on the beach or witness her determination at a school walk-a-thon, we’re reminded that dreams can come true. Often, they exceed our greatest expectations.
Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.
About the Author
Comments