The first is that your voice is worthy of being heard. Initially, I let doctors guide the conversation and did not disagree when I did not agree with their opinions. However, discourse is necessary for developing a solution. Second, develop a support network. I used to want to take on all the challenges myself. I thought this approach was me being chivalrous, but I would have been more successful if I had relied on those who were ready to lend a helping hand. Third, borrow ideas from other communities. There is a wealth of resources and information. Even if the community does not match your label, get involved. Fourth, make connections. The world is truly interconnected and someone in Serbia may have the solution or inspiration you are looking for. Finally, I wish someone would have told me that miracles are not a flash of divine intervention. Instead, it is the people and opportunities that interconnect your journey and taking action on those encounters.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Richard Poulin and Judy Wei, parents of Rylae-Ann.
Richard and Judy are international educators working in Thailand and parents of Rylae-Ann, who suffers from a rare disease known as aromatic l-amino decarboxylase (AADC) deficiency. When she was 3-months old, they knew something was wrong. After a series of misdiagnoses, her parents uncovered her disease and an investigational treatment that gave her a chance on life.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific path?
Despite our daughter being misdiagnosed and going 8-months until receiving a correct diagnosis, our experience was relatively fast. Some never receive the correct diagnosis. In addition, due to receiving the correct diagnosis, our daughter was in position to receive a transformational investigational treatment. She was the youngest to receive this procedure, and her results have been nothing short of miraculous. We have since established Teach RARE, a non-profit company made up of professionals who volunteer to support parents of rare diseases, undiagnosed diseases, and special needs communities to receive educational services.
Can you share the most interesting story that happened to you since you began?
My wife is from Taiwan, and I am from America. We met in Thailand, and unbeknownst to us, we are recessive carriers of a rare gene. In addition to these astronomical odds, our child only has a 25% chance of expressing the gene. Our daughter was born with an ultra-rare disease. Although doctors could not diagnose correctly, we never gave up hope and continued to research. A family member directed us to a Facebook post about a child with a rare disease known as aromatic l-amino decarboxylase deficiency or AADC deficiency. The child had similar symptoms to what our daughter was experiencing, and we knew immediately that this must be the ailment our daughter was also suffering from. We read various medical journals about AADC deficiency and learned there had been previous clinical trials for an investigational treatment for this rare disease. Even though we were not sure that the doctor that published the paper would be able to help, we hopped on a plane and traveled to visit him. Although surprised to see us, he was able to quickly determine that our daughter, in fact, did have AADC deficiency. During that appointment, we found out there was still one more spot available in a clinical trial that had not been published yet, and the team had been screening newborns for two years searching for another patient. Our daughter was enrolled, and she became the youngest patient to receive the gene therapy.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
In addition to being a parent to a child with high needs, we both have full-time jobs. After work, we also have our own business we run part-time Monday through Saturday. If that weren’t enough, we have our non-profit educational services and speeches we do to raise awareness. We stay busy and rely on our calendars to manage everything.
One evening, our calendar sent us an alert that our online presentation to a large group of doctors starts in 5 minutes. Because of the international date line, we thought our presentation was the following day. We were ready for bed, ready to close our eyes, but within 5 minutes we were dressed and in front of the camera talking and trying not to look disheveled. Luckily, we knew our content extremely well and were prepared.
Can you describe how you are making a significant social impact?
Many parents in the rare disease, undiagnosed diseases, and special needs community are unsure how they can help their child. Paramedical therapy such as physical, occupational, and speech therapy are often expensive or unavailable. We provide parents support on how they can accomplish educational services at home that also support therapy goals. In addition, we provide support for how parents can navigate the medical system and access additional benefits. We join various events to present our story to stakeholders in the medical community and help raise awareness for rare diseases.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
Fellow parents and children in the rare disease community inspired us considerably. Seeing their dedication to their child, watching how families persevered when faced with extreme challenges, and witnessing the results of children’s hard work was motivating. It pushed us to do the same. It gave us hope when we needed it the most. It also showed us that happiness and memories can be made along the way and that our circumstances do not exclude us from being a happy family.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
A politician can make it easier for patients in the rare disease community to access new procedures. For example, a COVID vaccine was developed and made available in one year. We should offer an express pathway for medical companies to conduct clinical trials and make new procedures available to patients. Our daughter was facing death, and there was no option but to watch her suffer. Most in our community are bed ridden and often die within the first few years of life. If we did not have the opportunity to participate in this clinical trial, we would have lost our daughter and not have this amazing daughter we have today.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership is persevering in the face of significant obstacles even when a pathway to a solution does not seem to exist. Leadership is making connections with various stakeholders to achieve an objective that is greater than any one person and requires a collaborative effort to achieve.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
The first is that your voice is worthy of being heard. Initially, I let doctors guide the conversation and did not disagree when I did not agree with their opinions. However, discourse is necessary for developing a solution. Second, develop a support network. I used to want to take on all the challenges myself. I thought this approach was me being chivalrous, but I would have been more successful if I had relied on those who were ready to lend a helping hand. Third, borrow ideas from other communities. There is a wealth of resources and information. Even if the community does not match your label, get involved. Fourth, make connections. The world is truly interconnected and someone in Serbia may have the solution or inspiration you are looking for. Finally, I wish someone would have told me that miracles are not a flash of divine intervention. Instead, it is the people and opportunities that interconnect your journey and taking action on those encounters.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
Admiral McRaven said that the average American will meet 10,000 people in their lifetime. If we seek to change the lives of just 10 people — and each one of those people changed the lives of another 10 people — then very quickly we will have changed the world.
That is why education and educators are so important. I envision developing a training school for educators or stakeholders to receive educational services workshops that supports inclusive education for the rare disease, undiagnosed disease, and special needs community. This will create positive exponential progress.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
My favorite quote is, “Success is not owned; it is rented and the rent is due every day.” It is a reminder that when we are successful today, tomorrow will still require hard work. Life is a continuous journey.
My wife would add, “Difficult roads often lead to beautiful destinations.” Although we all will be faced with serious challenges and adversity, these challenges will ultimately lead us to beautiful destinations if we never give up.
Is there a person in the world, or in the US, with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I would love the opportunity to meet with Bill Gates. He himself is a story of perseverance, but today he does so much for health and education industries while striving to make a positive difference in the world. Judy and I share similar ambitions, and I am sure he would provide a lot of insight on our journey.
How can our readers further follow your work online?
Readers can best connect with us by visiting our website TeachRARE.org. We post our projects, news, and stories. They can look forward to our upcoming book, children’s book, and curriculum. Our website also links to our social networks: Facebook, YouTube, Twitter, and Instagram.
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How Richard Poulin of Teach RARE Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.