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Prayers and Miracles at Work: Stories of Hope from TeachRare

Prayers work, and miracles do happen.

In April 2018, our daughter, Rylae-Ann, was born, and shortly after, was baptized at Holy Spirit Catholic Church. Everything was perfect, and our family beamed with pride. We accepted new teaching jobs in Singapore and began our perfect life. However, this was short-lived.

When my daughter turned 3 months old, we began seeing several concerning signs, including what looked like a seizure. For 8 months, we lived in the hospital because our daughter was admitted to ICU several times and underwent invasive diagnostic testing while we searched for second opinions. Her symptoms included the inability to move, seizure-like events every three days, poor feeding and digestion, sweating, sleeping issues, and an overall failure to thrive. She required constant care and 24-hour supervision.

Baptism at Holy Spirit Catholic Church
Baptism at Holy Spirit Catholic Church in June of 2018.
Rylae-Ann's first of many pediatric ICU visits.
Rylae-Ann's first of many pediatric ICU visits.

Rylae-Ann received several diagnoses, which never sat right with my wife and me. We visited several hospitals and even went to other countries trying to get answers. We never gave up hope and continued searching. During those months, the family and community of Holy Spirit Catholic Church prayed for our family.

One evening, about a week before Christmas in 2018, my wife’s brother happened upon an article on Facebook. It featured a child with an ultra-rare disease with similar symptoms to our daughter. After seeing that post, I immediately began searching the internet. I found some research papers about a doctor in Taiwan who had conducted clinical trials on this rare disease. I discovered that the condition affects around 130 people worldwide. I continued to read. Then I read the words no parent wants to read. With my throat tight and my heart rate thumping, the medical jargon stated that there was no cure and children with this disease die at around 2 to 4 years old.

We knew our best chance was to visit the doctor that published the papers. By the grace of God, we were able to secure an appointment the day after Christmas. We packed our bags and flew to Taiwan just a few days after reading the research papers. I was uncertain if the doctor would be able to help, but I was confident that my daughter did, in fact, have the disease featured in the article.

Christmas 2018

In 2018, a random Facebook article led us to various research reports about a rare disease. After reading those papers, we were on a plane to meet Dr. Hwu, the doctor who wrote those papers. The picture was taken Christmas 2018, the day we first met.

We arrived in Taiwan on Christmas Day. My wife and I tried calming ourselves by walking to a nearby park that evening. It was a sad and depressing evening for us as we tried to digest this rare disease’s cold, hard facts. I promised her that our family would never have another Christmas like this.

The following day our family was apprehensively waiting outside the doctor’s office. When we were called in, we explained to the doctor that we believed our daughter had the rare disease featured in his research paper. He was surprised to see us. After a short observation, Dr. Hwu could confidently tell us that our suspicions were correct. After 8-months of searching and countless invasive tests, we finally knew what was happening to our daughter. Our daughter had Aromatic L-Amino Decarboxylase (AADC) deficiency.

We learned during that appointment; his research team had been searching for another patient for more than 2-years. One final opening for another clinical trial had yet to be listed online. Our daughter was blessed to join this potentially life-saving clinical trial. Although 8-months seemed like an eternity to us, we learned that this was a relatively speedy diagnosis compared to other rare diseases, especially one as rare as AADC deficiency.

Rylae rests after gene therapy with a blanket made by Holy Spirit Catholic Church

11-months later, fighting to keep our daughter alive, she underwent the experimental gene therapy procedure. On her was a blanket made by the Holy Spirit Catholic Church members. We were unsure what the results would be, but the only other option was to continue to watch our daughter suffer until she met the fate of other children with the debilitating disease. The results were beyond our dreams.

Today, at four years old, Rylae-Ann can run, swim, and even ride a horse. She loves being independent and learning. She has made incredible progress and continues to do so. This gift has inspired our family to establish Teach RARE, a non-profit organization to support other families in the rare disease, undiagnosed disease, and special needs community. Also, I write a weekly column to help other families in the AADC deficiency community.

This miracle was a result of your prayers. There is no doubt that the experimental treatment played a substantial role in her improvements, but the journey to treatment, how we discovered it, and how we maximized the treatment results are a miracle.

Also, prayers do work. Knowing that you were out there praying for our family, sending well wishes, and motivating us gave us the energy and creativity to accomplish what seemed impossible. So, when you say the prayers during intentions in mass, pray with all your heart and know that those prayers have a profound effect.

My wife and I are good people, but we do not consider ourselves more devout than others. I wondered why God would bless us, but I learned we are all worthy of God’s blessings, and we all have a job to fulfill in God’s plan. Accept his grace and know you are more than deserving.

This is only a fragment of all that transpired, and I aim to better document God’s hand in our journey. I used to believe that miracles were a flash of divine intervention. Now I know that God places people and opportunities in our path. If we are open to his message, we can act upon those gifts to make the impossible happen.

Faithfully,

Richard, Judy, and Rylae-Ann Poulin

AADC Story
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