A Mother’s Message of Hope for AADC Deficiency
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by
Judy Wei
In July 2022, we met Adam’s family in Houston, Texas. However, their journey started many years before that and on the other side of the world.
During an AADC Family Network gathering. Duha and I connected instantly. We shared our stories that were mixed between laughter and tears. It was reassuring to meet another mother face-to-face. To hold her son and know that there was someone else in the world who truly knew how I was feeling.
But of course, we each have unique stories as well. Often our family gets the spotlight since it is pretty amazing. However, it is no less amazing than any other in the AADC deficiency community. In fact, when Duha was telling me her story, I felt like I heard the plot of the next Hollywood action movie.
AADC Family Meetup
Similarities in AADC Deficiency Stories
We share the same common language, and we knew exactly what it meant when our kids were going through spells, OGC, and tongue-thrusting. Duha mentioned that she would never leave Adam’s side and was with him 24/7. Adam’s anxiety and sleepless nights gave Duha so much stress and worries.
She went through different doctors who gave them the wrong medications. One doctor even told them to give up on Adam.
“Of course, I have hope, I will always have hope for my son!”
During the clinical trial, their family took advantage of the Ronald McDonald House program, which we also did. Relying on that service allows a family to dedicate their full attention to their child and save essential money for therapy.
After Gene Therapy, Adam had made steady progress with his movements and even feeding, whereas before, it was challenging for Adam and his parents to feed him. Both of us reflected on how long it took to feed and the consequences that resulted if we were not extra cautious with each spoonful.
Differences in AADC Deficiency Stories
Richard and I were fortunate to grow up in a world where our greatest challenges were where we should travel for our next vacation. We knew how privileged we were and always remained humble. However, when hardship finally did come our way, we were fortunate that we could dedicate our full attention to it.
For Duha and her family, they first left Syria and then traveled to the United Arab Emirates. There they learned about their son having the rare AADC deficiency disease. When a clinical trial opened in the United States, they had the extra layer of applying for a visa.
Even if they could get accepted to the trial, they would have to wait several months or even a year to find out if they could get a visa to travel. Mouayad is a very determined father and is set to work on it. Despite receiving an initial rejection letter, he applied again.
Eventually, he was accepted. In his updated documents, he outlined his reason. He must have done an excellent job because his family received a visa promptly!
A Mother’s Message of Hope
Today, Adam’s mood is happier, and a social boy. I’ll never forget the pool time we shared with Adam. We are so proud of all that this family accomplished and continue to accomplish. They are the epitome of the American Dream being realized.
"Keep having hope, we didn't listen to our doctors. We listened to our feelings. We are strong parents. You will see improvements after gene therapy. Your life will change after gene therapy."
