About Us:

I’m a huge advocate for my son who was born with a rare, genetic condition called Lowe Syndrome and primarliy affects the brain, eyes and kidneys.

Noah and I are here to help raise awareness of Lowe Syndrome and my goal is to do that with a professional, high-quality children’s picture book.  However, I help in getting it finished with illustrations and professionally published.  

The hardcover children’s picture book will be a very basic introduction of Lowe Syndrome.  There will be an additional page at the end similar to a toddler lift-the-flap book that will explain more about Lowe Syndrome that is easy to understand.  

The more money I raise, the more copies of the book I can get printed and distributed across the country to libraries, non-profit organizations that focus on rare diseases, schools, and available online.

If this project is successful, my plan is to create more books on other rare diseases that need more awareness and understanding and end up with a series.  

The Story:

One beautiful, spring day, I was sittin’ by the old playground oak tree,

Strummin’ my guitar when I happened to see …

A boy about my age who looked different, no doubt.

I put my guitar aside to introduce myself and find out what he was all about.

I said, “Hello. My name is Sawyer. It’s nice to meet you.”

This kid with glasses introduced himself as Noah and said, “It’s nice to meet you, too.”

Noah saw the curious look in my eyes, and he pushed the glasses back up his nose.

“I have to wear glasses,” he said. “Because of my Lowes.”

“Lowes?” I said. “What is that, to be exact?”

“It’s called Lowe Syndrome,” Noah said, as a matter of fact.

“I have difficulty with my brain, eyes, and kidneys.”  He pushed his fire truck on the dirt and continued to play.

I wanted to know more, so I sat down beside him, and he continued to say,

“There are less than 500 boys in the world like me, which makes me rare.”

“But it also means I have to see doctors and hospitals often,” he said, which I thought seemed unfair.

“Would you like to play pirates with me?” Noah asked as he put down his fire truck toy.

With my answer of “Sure,” he gave me an extra patch and play sword, us maties screamed “Arrrrr” and  “Ahoy!”

Even though this kid was smaller with thick, brown glasses, all I saw was my new buddy.

He seemed super cool, fun, and not at all like a fuddy duddy!

When we pirates finally took a break with water and some snacks,

We then sat by the old oak tree to rest our legs, arms, and backs.

Sitting by the old oak tree, I asked Noah if he’d like to play some tunes on my guitar.

He said, “I have my own,” and he didn’t run off far.

He grabbed his guitar from his mom, and what do you know, it looked just like mine!

That’s when I knew, this friendship must be a sign.

Noah sat back down by the oak tree with his guitar and strummed a catchy new tune.

It was about his new friend Sawyer who played the guitar on the moon.   

We became great friends that day, and I am thankful, you see,

Because my rare friend, Noah, he also chose me.

From that day on, we strummed often by that same old, oak tree,

As we laughed and pretended to be rock stars, just him and me.