Utah father writes book inspired by son with rare genetic condition

Cameron and Hannah Bell, with their son Samuel, who has a rare genetic condition called trisomy 9p. Cameron says he was inspired to write a book that describes the perspective of someone who, like Samuel, has a life-altering genetic condition. (Photo by Maegan Stallings)

Estimated reading time: 4-5 minutes

DRAPER — When Cameron Bell was taking the train to work for his job as a data analyst, he found himself writing a few words. These were not words describing the latest trends in analytics; Over time, these words will become a children’s book inspired by her 5-year-old son, Samuel, who was born with a rare disability called trisomy 9p.

Number five always knew he didn’t belong.

Everyone had a talent except him.

Her bottom was round and her top was long…

Everything about pumpkin five was wrong.

This verse Bell wrote on the train that day was one of many that eventually turned into a book he called “Five Little Pumpkins: A Tale of Vegetability.”

The book is about five pumpkins that are stuck and need help, but a pumpkin is not a pumpkin at all, but an eggplant. Bell said the words he unwittingly wrote that day describe what children with disabilities and, by extension, the parents of those children often feel.

“I was on the train, on my way to a conference in Salt Lake City and I just started writing this story…about halfway through, I started laughing about it because it was pretty funny,” Bell recalled. “Then I realized it could end with the differences of eggplant actually being an advantage. Once I had that thought, I really wanted to end it because there are so many similarities in Samuel’s life.”

“Five Little Pumpkins: A Tale of Vegetability” by Cameron Bell is available on Amazon.com. Bell says he was inspired to write the book, which describes the perspective of someone who, like his 5-year-old son Samuel, has a life-altering genetic condition. (Photo: Cameron Bell)

Samuel’s disability caused him to live in a plant-like state. He is fed by a tube, is unable to speak and has just started walking at the age of 5.

“He’s so different, and there are times when it hits you in the face,” Bell said. “Whether you’re at the grocery store and he’s screaming at the top of his lungs and people are staring at you, or you’re at church and he’s screaming during the primary program – those times when he’s different are painful. But he’s also a person just like everyone else and he has the ability to connect with people in his own way. Even though he’s not the warmest and he doesn’t like cuddling you, that doesn’t mean people don’t connect with him.”

One of a kind

Trisomy 9p, Bell said, is very similar to Down syndrome (trisomy 21), but instead of a duplication of the 21st chromosome, Samuel has a duplication of the ninth chromosome and a deletion on the 15th chromosome. Bell said there are only 150 documented cases of the disease and his son is the only one in the world they know of with this specific chromosome duplication and deletion.

As he described many of the difficulties that come with Samuel’s disability, Bell was quick to recognize what makes his son so important and worth sharing with the world.

“Samuel likes to go out, he likes people watching and he likes large groups of people,” he said. “His favorite place is church. For some reason he loves it! He can people watch. He can go to Primary and sing and he loves music.

“We’ve had so many people in our social circle tell us that they thought he was special in some way and made them smile, and I think that’s worth a lot.”

Samuel Bell, 5, has a rare genetic chromosomal disorder called trisomy 9p. He is fed by a tube, is unable to speak and has only recently started to walk. Samuel's father, Cameron Bell, says he was inspired to write a book that describes the perspective of someone who, like Samuel, has a life-altering genetic condition. — Samuel Bell, 5, has a rare genetic chromosomal disorder called trisomy 9p. He is fed by a tube, is unable to speak and has only recently started to walk. Samuel’s father, Cameron Bell, says he was inspired to write a book that describes the perspective of someone who, like Samuel, has a life-altering genetic condition. (Photo: Photo by Maegan Stallings)

“We are all a little different”

Bell said that while her book is a lot about her son and others like him, anyone can make sense of it.

“During our journey that we had with Samuel, we spoke to many genetic counselors and doctors, and I’m surprised at how much variability and variation there is, even among ‘normal’ people. “”, did he declare. “I think we’re all a little messed up. We’re all a little different. Maybe Samuel is a little more obvious because he doesn’t talk and because he’s powered by a tube, and I know that there’s a use for the word ‘normal’, but I think we all feel ‘different’ in some way. The idea is to celebrate our differences instead of despising them.”

I think we’re all a little messed up. We are all a little different. … The idea is to celebrate our differences instead of despising them.

–Cameron Bell, author

“Five Little Pumpkins: A Tale of Vegetability” was released earlier this month on Amazon, and Bell said he only really shared the story with family, friends and some relatives who have concerns. disabled children. He said the book was truly a passion project and something that bonded him on a deeper level with his son, who – if it unfolds as the book is written – just might save the day. situation.

Pictures

Latest Uplifting Stories

Arianne Brown has been a contributing editor to KSL.com for many years with the goal of sharing heartwarming stories.