We are paying it forward after all the care and comfort we received
When things were darkest, someone was always there to offer a kind word
My daughter, Rylae-Ann, was born with a rare and debilitating genetic disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, which meant countless trips to the emergency room and a battery of tests.
Each time we’d enter the hospital, the only thought that crossed my mind was caring for my daughter. There was always so much noise, activity, and commotion that I had no opportunity to process the comforting comments that came my way.
Nurses and machines surround Rylae-Ann at the emergency room. (Photo by Richard E. Poulin III)
Rylae-Ann has since received gene therapy after my wife, Judy, was sent a Facebook post from her brother about our daughter’s condition, which helped us bring an end our diagnostic odyssey.
Gene therapy changed the course of my family’s life forever. Before it, we had been consumed with caring for our daughter and unable to consider anything else. After it, Rylae-Ann made wonderful progress and we became the parents we had dreamed of being.
We also finally found the chance to reflect on the past, and we remembered that on each dark path, someone was always there to cheer us on or provide comfort. We didn’t realize the significance of it at the time.
At work, even though I never talked about specifics, my co-workers knew something wasn’t right. My demeanor gave it away. But random small gifts would show up or an extra comforting smile would come my way.
Small gestures may pale in comparison to the severe pain you may be going through, but they still have an effect. My work life improved and I could reserve my strength to care for my daughter.
I was able to tell many of them later that their actions made a difference, even if my actions at the time didn’t show it.
AADC deficiency is a rare disease and does not have a large support organization like many other diseases do, so my wife and I decided to search for organizations where the disease symptoms. were similar to Rylae-Ann’s.
Open arms
Our daughter did not have the same diagnosis, but these organizations welcomed us with open arms, and the support we were offered was even more significant. Parents and professionals patiently answered our questions and helped to motivate us even if we didn’t provide the same. They openly shared their struggles, even though we were very closed about our own.
Judy Poulin sits beside Rylae-Ann during a stay in the intensive care unit. (Photo by Richard E. Poulin III)
When Judy and I would bring Rylae-Ann to the emergency room, it often meant a week in the hospital would follow. We didn’t want to leave her side, but only one person could sleep in the two-seater chair, so the other person begrudgingly would have to leave.
Each hospital had a Ronald McDonald House Charities, which offered beds and facilities to parents of children in emergency care, so I was provided a room in each location we visited in Thailand, Taiwan, Singapore, and the U.S.
During one hospital stay, we got to know another mom who also stayed at a room provided by Ronald McDonald House Charities. Meeting her and her daughter helped us reevaluate our narrow perspective.
Her daughter had spent most of her life in the hospital because of cancer. Listening to the young girl and her mom share their story motivated us on our journey and gave us hope. They were facing their challenges while still thinking about those around them.
Paying it forward, with thanks
Judy Poulin cares for Rylae-Ann during a stay at the Ronald McDonald House Charities. (Photo by Richard E. Poulin III)
We have decided we would take the time to match that hospitality. I was reminded of all the people who helped us on our journey and wanted to show it.
I have yet to properly thank all those who went out of their way to show love and encouragement, and I may never get the chance to do so. That’s why I decided to write a column for AADC News for other parents and to start a nonprofit. I want to pay forward all the fortunate care and kindness others showed my family.
To those who encounter someone going through a difficult time, know that your words and actions have an impact. Their actions may not show it, but giving a gift of kindness may help them in a way they don’t yet know. To those facing challenges, I hope you can come to see the kindness you are receiving. You do not need to say thank you, but consider paying it forward in time to complete the circle for future families.
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.
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