Saving Baby Akin’s Life
Richard Poulin IIIWhen my wife, Judy, and I first heard that another family in Thailand had a child diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, our hearts clenched with mixed emotions.
On one hand, we felt an unexpected surge of relief—we were no longer alone in this journey. For so long, we had navigated the uncertainty of Rylae-Ann’s diagnosis feeling isolated, the only family in our country facing this rare and devastating condition. Now, there was another family who understood, who knew the weight of helplessness, the long nights of searching for answers, and the hope that flickered against all odds.
But alongside that relief came a deep ache. We knew all too well the anguish that Akin’s parents were now enduring—the fear of watching their child struggle, the relentless pursuit of a cure, and the quiet, suffocating grief of realizing how rare and misunderstood this condition truly is. No parent should have to endure this heartbreak. Yet here was another family, walking the same painful road we had walked.
Meeting Baby Akin
We first met little Akin when he was just over a year old. The moment we saw him, something in us shifted. It wasn’t just empathy—it was recognition. His tiny body, his fragile movements, the way his mother held him so carefully in that upright position we knew all too well.
It was like looking at our own past, at Rylae-Ann before gene therapy had given her a second chance.
Akin’s father, Alongkorn, had found us the way so many rare disease families find each other—through desperate, late-night searches, combing through every article, every forum, every glimmer of information that might hold the key to his son’s future. When he finally reached out, his words carried an urgency that transcended language. He wasn’t just searching for answers. He was searching for hope.
When Alongkorn and his family arrived at our home in Bangkok, it was as if two worlds—two versions of the same story—were colliding. Akin’s mother cradled him just as we had once cradled Rylae-Ann, their older daughter carefully observing, sensing the weight of what was unspoken. As we gathered around the dining table, we shared stories—stories of sleepless nights, of battles fought with insurance companies, of victories as small as a single, deliberate movement of a tiny hand.
We laughed at the moments only parents of AADC children would understand—the absurdity of trying to explain this rare condition to others, the way we’d become experts in medical terminology overnight, the unshakable bond between our children and their feeding tubes. And then there were the quiet moments, the ones where no words were needed—just a nod, a tear held back, a glance that said, I know. I’ve been there too.
Akin’s Future
But as the conversation turned to Akin’s future, the weight of reality settled over us. Akin was nearing 18 months old—the threshold for the gene therapy that had saved Rylae-Ann’s life. But it wasn’t available in Thailand. What did that mean for him? Would he have to wait? Would his condition worsen while bureaucracy and geography stood in the way of a treatment that could change his life?
Judy and I knew we couldn’t stand by and do nothing. Through our nonprofit, Teach RARE, we began working with Akin’s family, providing early intervention activities that doubled as therapy. Small victories—a new sound, a little more strength in his limbs, a fleeting expression of joy—became the fuel that kept us all going. But the reality was undeniable: Akin needed gene therapy. And if Thailand couldn’t offer it, his family would have to seek it elsewhere—an almost insurmountable challenge.
Akin’s diagnosis had come thanks to the incredible team at Chulalongkorn Memorial Hospital, whose dedication to Thailand’s rare disease community was nothing short of heroic. But even with a diagnosis, the path forward was daunting. We knew that feeling all too well—the relief of having an answer, only to be met with the crushing reality of what that answer meant.
Yet, through the darkness, there is hope.
Gene therapy changed our daughter’s life. It transformed Rylae-Ann from a fragile child who could barely lift her head to an independent, joyful little girl who now runs, plays, and dreams without limits. It gave us the miracle we had once thought impossible.
And now, we are fighting for Akin to have that same chance.
No parent should have to watch their child suffer, knowing that a treatment exists but remains out of reach. No family should have to face this journey alone. That’s why we are rallying together—to help Akin access the lifesaving treatment he desperately needs.
We recently launched a GoFundMe campaign to support Akin’s journey. It’s more than just a fundraiser—a lifeline, a chance to turn hope into reality.
Because every child deserves a future.
Because no family should fight alone.
Because together, we can rewrite Akin’s story—just like we did for Rylae-Ann.
The following is an open letter from Alongkorn:
When Akin was just three months old, we noticed he could not control his head, prompting us to consult a pediatric neurologist. It was discovered that he has significant motor skill impairments (known as hypotonia). Despite receiving physical therapy six days a week, his condition has not improved.
Every 3-4 days, Akin experiences severe oculogyric crises and dystonia, which can last for 7-8 hours. His eyes deviate upward and laterally, and he suffers from jaw spasms and muscle contractions. He experiences insomnia and cries every 1-2 hours at night. Akin’s development is delayed, he has not yet achieved milestones like head control, crawling, sitting, or speech. He has undergone several tests, including EEG and CT scans.
In August 2024, Akin was diagnosed with AADC Deficiency, a rare genetic disorder that affects dopamine production in the brain. This neurotransmitter is essential for movement and development, and its deficiency leads to severe developmental delays, movement disorders, muscle weakness, and other debilitating symptoms. As a result, Akin’s development is currently at the level of a newborn, and his condition continues to worsen over time.
At present, Akin is 1 year and 3 months old and has been on conventional medications for several months. However, his condition has not improved, and he is experiencing significant side effects. We had nearly lost hope for his recovery, but recently, a breakthrough treatment has been developed that offers a glimmer of hope: gene therapy that has shown promising results in treating AADC Deficiency.
Children who receive this treatment between the ages of 1 and a half to 2 years (the earlier, the better) have demonstrated significant improvements in motor skills, such as sitting and walking. This therapy could alleviate many of the debilitating symptoms of AADC Deficiency and give Akin the opportunity to regain some of his lost abilities and improve his quality of life.
However, the cost of this life-changing treatment is an unimaginable 3.6 million USD, a sum far beyond our ability to afford.
As parents, our greatest wish is to see our son live a normal life and have ability to experience the world around him. We are reaching out to compassionate individuals like you to help make this possible. Please consider making a donation to our GoFundMe campaign. Every contribution, no matter the size, will go directly toward covering the cost of this treatment. Your generosity will provide Akin with a fighting chance and give him access to the care he desperately needs.
On the other hand, if fundraising goals aren't met or support from pharmaceutical companies isn't available, the funds can still be used to cover future medical costs and provide ongoing care. Proper planning will help the patient receive necessary treatment while easing financial stress.
Thank you for taking the time to read our story and consider our request. Your kindness and generosity will make a life-changing difference for our son, and we will be forever thankful.
With heartfelt gratitude,
As you read from Alongkorn, the treatment cost is staggering. To many, it may seem impossible, but at Teach RARE, achieving the impossible is something we are good at.
We are working with governments, hospitals, and companies to support Akin’s cost of treatment. While we do that, we need your help too. Every little bit counts. Also, helping to share this story is crucial. Every share, click, and comment helps us share this story with more people.
Thank you for helping save Akin’s life and we look forward to sharing Akin’s journey for gene therapy with you in the very near future!
