After Every Storm Comes a Rainbow

Program: HNRNPH2

Layken’s Story:

A Glimmer of Hope
Layken Hope Pleasant is a joyful, radiant little girl who seems to carry sunshine wherever she goes. Her smile is infectious, her energy magnetic. Whether she’s waving to a stranger, flashing a sweet smile, or offering a quiet, hopeful presence, Layken has a way of drawing others in. Attention and approval from new faces bring her happiness, and she returns the kindness with unmatched charm.
One of her greatest joys is spending time with her slightly younger sister, Londyn. Whether they’re swimming, playing doctor, or attending therapy sessions together, their bond is strong, and their laughter often fills the room.

Layken was born on September 8, 2016. Her entrance into the world was swift and beautiful—she earned perfect Apgar scores and looked perfectly healthy. A low body temperature at birth required some extra warming blankets, but nothing at the hospital indicated there was anything of concern. It wasn’t until the family returned home that subtle signs began to appear. Layken started losing weight, despite feeding well. Her parents had to work hard to keep her awake during feedings. Concerned, her mother raised questions with their pediatrician, only to be reassured repeatedly that some babies simply take time to catch up.

Though her instincts whispered otherwise, Layken’s mother poured her love into caregiving and tried to trust the process. But by nine months, developmental delays became more obvious. Layken struggled to sit up, showed little interest in toys, and could only engage with one at a time. Still, doctors advised waiting until she turned one.

Her first birthday came and went. Layken could sit with assistance, but she still couldn’t crawl or stand. That’s when early intervention began. She was enrolled in multiple therapies—physical, occupational, speech, feeding, and nutritional support.

After countless appointments, they were referred to a geneticist. The initial results came back inconclusive. But hope never left their side. Eventually, they found their way to Duke University, where Whole Exome Sequencing was performed. Nine months later, the answer finally arrived: Layken was diagnosed with an extremely rare neurodevelopmental disorder—HNRNPH2.

This diagnosis explained everything. From seizures and global developmental delay to hypotonia, mobility issues, language impairment, sensory processing challenges, gastrointestinal issues, CVI, and more. The list was long and the road ahead unclear, but there was finally a name for the struggle—and with that, came direction.

A new chapter began with n-Lorem, a foundation dedicated to helping those with nano-rare conditions. Layken was selected to receive an antisense oligonucleotide (ASO) therapy custom-designed for her condition. Since starting the treatment, progress has been visible, and hope continues to grow stronger.

For Layken and all of her genetic brothers and sisters battling HNRNPH2, the journey is far from over. But with ongoing support, resilience, research, and the clinical trial, the future shines brighter. Her story is one of courage, faith, and unwavering love.

After every storm, comes a rainbow—and Layken is the very definition of hope.

* In 2024, Layken received her first dose of a personalized experimental ASO medicine discovered and developed by n-Lorem