Reawaken Rare Disease Parent Memoir

When life changed everything, hope reawakened what seemed impossible.

REAWAKEN: Finding Hope, Purpose, and Joy Through Life’s Unexpected Journey is the true story of one family’s search for answers after their infant daughter was diagnosed with ultra-rare AADC deficiency.

From misdiagnosis and experimental gene therapy to remarkable milestones and life beyond treatment, this powerful memoir explores faith, caregiving, resilience, medical innovation, and the courage to keep moving forward.

All proceeds support rare-disease and special-needs families through Teach RARE.

Reawaken: Finding Hope, Purpose, and Joy Through Life’s Unexpected Journey by Dr. Richard Earl Poulin III and Ms. Judy Wei is a wonderfully powerful and heart-rending account of one couple’s trials and triumphs with parenthood. Richard and Judy are educators who have spent a vast amount of their lives in Asia and particularly Southeast Asia. When American Richard Poulin met Taiwanese Judy Wei, the attraction would eventually lead to marriage, and they would travel to Thailand and then to Singapore to teach. They welcomed the news that they would be having a baby and were excited to become new parents. It wasn’t long after the birth of their beloved daughter Rylae-Ann that they realized something wasn’t quite right with her development. Their daughter was not developing as expected, with unexplained seizures, an inability to hold her head up, and other worrying symptoms. What followed was a seemingly endless search through the internet, countless medical visits, and diagnoses, only to finally discover their daughter suffered from a rare, genetic disorder for which there was no real treatment. It was shared by only a handful of children worldwide. A radical new gene therapy trial in Taiwan gave them hope that perhaps there would be some chance for their daughter to lead a normal life.

Reawaken is a deeply personal and moving story that any parent will quickly be able to identify with. Authors Dr. Richard Earl Poulin III and Judy Wei have created a timeline of their daughter’s fight for normalcy that brings readers right into the middle of their domestic pain and angst. I particularly appreciated the willingness of the authors not to gloss over the difficulties they experienced as parents of a child with such a debilitating condition. What impressed me the most was Richard and Judy's stubbornness not to allow the condition and the difficulty of raising a child such as Rylae-Ann to completely shut them down emotionally. The sheer joy and relief that they gained from each other, their families, and from Rylae-Ann’s progress, however small it may be at times, is a reminder that, as parents, “there but for the grace of God, go I.” The COVID-19 pandemic and the lockdown allowed them to write this book and also to become deeply involved in community outreach to other parents facing similar challenges. This is the overarching message of the book. Although we may feel isolated at times, especially when it comes to our children’s health, ultimately, we are all part of a worldwide community, and we can reach out for help and guidance. Their daughter may well be on the way to achieving a normal and healthy life, but for this couple, her condition definitely changed forever their perspective on what happiness and success truly are. I loved this story and highly recommend it.

In Reawaken, Dr. Richard Earl Poulin III recounts the life he builds with his wife Judy after the two educators settle in Singapore with their infant daughter, Rylae-Ann. Parenthood begins happily as the family establishes a home, yet concerns emerge when Rylae-Ann starts having recurring episodes in which her body stiffens and her eyes move strangely. Delays in her physical development lead her parents into appointments with pediatric specialists, where early explanations bring temporary reassurance. As the episodes continue, the couple begin recording their timing and studying medical research themselves, drawing on the observational habits they use as teachers. Their search soon reaches beyond Singapore as they try to understand a condition few doctors have encountered. The memoir follows a family whose plans for ordinary parenthood become a determined effort to find answers for their daughter.

Dr. Richard Earl Poulin III’s Reawaken is an exceptional memoir, and the author writes about Rylae-Ann with such affection that she quickly feels familiar. I loved how naturally his humor comes through, keeping medical passages in the same conversational tone as the rest of the memoir. This is especially apparent when Rylae-Ann needs blood collected for genetic testing and the specialist who finally succeeds becomes “the Michael Jordan of baby blood draws.” So much of what he shares is helpful to parents in similar situations. As an educator, I especially appreciated how he explains teaching approaches in ways parents can use at home. This is shown when occupational therapy becomes part of breakfast, with Rylae-Ann practicing how to hold a spoon. Well written and inspiring, readers looking for memoirs about parenting through rare disease will embrace this.

Reawaken: Finding Hope, Purpose, and Joy Through Life's Unexpected Journey by Dr. Richard Earl Poulin III and Ms. Judy Wei tells the story of Richard and his wife, Judy, a couple raising their daughter, Rylae-Ann, through a series of expat postings in Beijing, Singapore, and Thailand. The book opens with the family settling into life abroad before strange, unexplained "spells" begin appearing in Rylae-Ann's development, brief episodes that doctors first dismiss but that grow more frequent and intense over time. Structured around the family's years-long search for an answer, the story follows Richard and Judy through medical appointments, self-directed research, and a chance clue from a family member that finally points them toward AADC deficiency, a disorder so rare that Rylae-Ann is one of roughly 135 known cases in the world. It's part memoir, part medical journey, built on the idea that faith and perseverance can carry a family through even the most uncertain diagnosis.

Dr. Richard Earl Poulin III and Ms. Judy Wei's voices on the page feel like sitting with a friend across from you, telling you what happened. Richard drops footnotes mid-chapter on odd little tangents, like why Asians remember the day of the week they were born, or how flight paths curve with the Earth, and somehow these detours never derail the story. The dread builds slowly and honestly; you feel the parents' confusion pile up, appointment after appointment, before the diagnosis finally arrives and everything clicks into place. Judy and Richard read like a real married couple under pressure, snapping at times, leaning on each other at others, and the two caregivers who step in during the Taiwan surgery, Tina and Angel, communicating through Google Translate and sheer will, stood out as one of my favorite parts of the book. Richard admits early on that he keeps his feelings "in a drawer labeled Fine," and watching him slowly unlearn that habit gives the memoir its backbone. Reawaken is a plainly written, deeply personal book that earns its emotion instead of reaching for it.

One Rare Diagnosis. One Impossible Decision. One Extraordinary Reawakening.

When Richard and Judy’s infant daughter, Rylae-Ann, began losing control of her body, they knew something was wrong. She struggled to feed, hold up her head, and control her movements. Frightening episodes were mistaken for seizures, yet test after test returned normal or inconclusive results.

Then, late one night, a Facebook post changed everything.

The information led them to research aromatic L-amino acid decarboxylase, or AADC, deficiency, an ultra-rare genetic neurological disorder. Convinced they had finally found the missing piece, they traveled from Singapore to Taiwan in search of answers.

The diagnosis gave their fears a name, but it also presented an unimaginable decision. At only 18 months old, Rylae-Ann was offered a place in an experimental gene therapy clinical trial. There were risks, no guarantees, and no roadmap for what would follow. Without effective treatment, however, she might never sit, walk, or speak independently.

Richard and Judy chose hope.

Following treatment, Rylae-Ann progressed from being unable to sit independently to crawling, walking, running, speaking, reading, swimming, and attending school. Yet gene therapy was not the end of her journey. It was the beginning of years of therapy, education, adaptation, advocacy, and determined family support.

REAWAKEN: Finding Hope, Purpose, and Joy Through Life’s Unexpected Journey is an honest, uplifting, and often humorous memoir about rare disease, caregiving, marriage, faith, disability inclusion, and medical innovation. It explores what happens after the breakthrough a family has prayed for finally arrives and how one family transformed its experience into a mission to help others.

Their journey inspired Richard and Judy to establish Teach RARE, a nonprofit providing educational resources, caregiver support, and advocacy for families affected by rare diseases and disabilities.

At its heart, REAWAKEN is a reminder that faith does not eliminate uncertainty, treatment does not end the work, and life rarely follows the path we planned. Still, hope, purpose, and joy can emerge from the journeys we never would have chosen.

All proceeds support rare-disease and special-needs families through Teach RARE.