Peter’s Tale of Triumph and Batten Disease

Peter holding the book, "Marshmallow and Peter"

Beth’s world shifted dramatically when her son, Peter, at just six years old, was diagnosed with Batten disease. “Honestly, I was overwhelmed learning that there was no treatment or cure. My sweet boy would slowly lose all of his abilities,” Beth recounts. The diagnosis was much to digest. However, instead of succumbing to despair, Beth and her family chose a different path—to live in the now, to cherish each moment with Peter, and to find the positive amidst the many challenges that lie ahead. 

“Peter has taught me to live in the moment, to choose joy. He has taught me about grace, faith, and persistence,” says Beth. These lessons in perseverance are at the core of their family’s journey and have been continually tested throughout the years. 

Persistence Pays Off  

Persistence isn’t just a word for Peter – it’s a way of life. Peter achieved a remarkable feat at just seven years old. This child author wrote a book titled, “The Adventures of Marshmallow and Peter.” Available on Amazon, the book has garnered a 4.8-star rating. In this charming story, Peter, who is totally blind, shares his adventures from the perspective of his trusty cane, which he affectionately named Marshmallow. 

“I wanted to tell people about myself. And that blind people can do anything,” says Peter. His book showcases his creativity and challenges stereotypes about blindness and disability. The book is a beautiful story about seeing the rainbow through the storm and enjoying unconventional friendships like Peter and Marshmallow. 

Peter defies expectations every day. “Having been diagnosed with Batten Disease makes me feel kinda cool because I am different from a lot of other people,” he remarks. But Peter is not defined by his condition. He’s a multifaceted individual with a love for soccer, a participant in a running club, a problem solver, crafter, Lego builder, and even holds a yellow belt in karate. Being blind has not hindered his ability to accomplish far more than average. 

In addition to being an accomplished child author, Peter is also a philanthropist. He donates 50% of the sales from his book to the Batten Disease Support & Research Association, demonstrating his commitment to helping others facing similar challenges. 

In fact, Peter says that he wants everyone recently diagnosed with Batten disease to read his book. He says that will help them better understand how to deal with the disease. 

Beth, Peter’s mother, marvels at her son’s resilience and determination. “Every day, in spite of blindness, in spite of his mind playing tricks on him, even though he has trouble remembering things and struggles with sensory and emotional issues, he tries his hardest,” she says. “Every day, he is brave and inspires me while still being a typical boy who likes to burp, be loud, and test our patience and boundaries.” 

What is Batten Disease?  

Batten disease is a group of rare inherited neurological conditions. These can cause visual impairment, progressive motor and cognitive decline, and seizures. Some symptoms can be present at birth, during childhood, or even in adulthood.  

What’s Next for Peter? 

Looking ahead, Peter plans to write another book—a testament to his unstoppable spirit and creative energy. His story is a powerful reminder that life’s challenges don’t define us; how we face them truly matters. Peter’s journey teaches us to embrace each moment. Find joy amid adversity. Never underestimate the power of resilience and determination. With each page he writes, Peter shows us that no matter how cloudy the day, a rainbow is always waiting to shine through. 

Peter’s impact reaches far beyond his words on the page. It’s in the smiles he brings, the hope he instills, and the joy he spreads to everyone he meets. With each day, he proves that despite the adversity, the light of hope and love can prevail. Through his whimsical storybook adventures and his unwavering spirit, Peter teaches us a valuable lesson: to never give up, always believe in ourselves, and find magic in the most unexpected places. 

Additional Reading

Follow Peter’s Journey on Facebook – Team Peter

Order The Adventures of Marshmallow and Peter on AMAZON.