HomeScienceGeneticsUtah dad writes book inspired by son with rare genetic condition

Utah dad 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 a person who, like Samuel, has a life-altering genetic condition. (Maegan Stallings photo)

Estimated reading time: 4-5 minutes

DRAPER – While on the train to work for his job as a data analyst, Cameron Bell found himself writing some words. They weren’t words that described the latest trends in analytics; these were words that would in time turn into a children’s book inspired by his 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.

His bottom was round and his top was long…

Everything about pumpkin five was wrong.

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

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

“I was on a train, on my way to a conference in Salt Lake City and I just started writing this story… about halfway through it I started laughing because it was kind of funny,” recalled Bell. “That’s when I realized it could end with the eggplant differences actually being an advantage. Once I had that thought, I really wanted to finish it because there are so many similarities to 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 a person who, like his 5-year-old son, Samuel, has a life-altering genetic condition. (Photo: Cameron Bell)

Samuel’s disability has led to a very plant-based lifestyle. He is fed through a tube, cannot speak and has just started walking at the age of 5.

“He’s so distinctly different, and there are times when that hits you in the face,” said Bell. “Whether you’re at the grocery store and he’s screaming at the top of his lungs and people are looking at you, or you’re at church and he’s screaming during primary — 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 doesn’t like to give you hugs, that doesn’t mean people don’t connect with him.”

One of thousands

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

While describing many of the difficulties associated with Samuel’s disability, Bell was quick to recognize what makes his son so important and worthy of sharing with the world.

“Samuel likes to go outside, he likes to people watch and he likes big crowds of people,” he said. “His absolute favorite place is church. For whatever reason, he just loves it! He gets to people watch. He gets to go to Primary and sing and he loves the music.

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

Samuel Bell, 5, has a rare genetic chromosomal disorder called trisomy 9p.  He is fed through a tube, cannot speak and has only recently started walking.  Samuel's father, Cameron Bell, says he was inspired to write a book that describes the perspective of a person who, like Samuel, has a life-altering genetic condition.
Samuel Bell, 5, has a rare genetic chromosomal disorder called trisomy 9p. He is fed through a tube, cannot speak and has only recently started walking. Samuel’s father, Cameron Bell, says he was inspired to write a book that describes the perspective of a person who, like Samuel, has a life-altering genetic condition. (Photo: Maegan Stallings photo)

‘We are all just a little different’

Bell said that while his book is very much about his son and others like him, anyone can derive meaning from it.

“During our journey that we’ve had with Samuel, we’ve talked to a lot of genetic counselors and doctors, and it amazes me how much variability and variation there is even among ‘normal’ people,” he said. “I think we’re all a little confused. We’re all just a little bit different. Samuel is maybe a little more obvious because he doesn’t talk and because he’s fed through a tube, and I know 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 rather than look down on them.”


I think we’re all a little confused. We are all just a little different. … The idea is to celebrate our differences instead of looking down on them.

—Cameron Bell, author


Five little pumpkins: a story about vegetableswas released on Amazon earlier this month, and Bell said he’s really only shared the story with family, friends, and some parents with children with disabilities. He said the book has really been a passion project and something that has connected him on a deeper level with his son, who – if it plays out the way the book is written – just might save the day.

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Arianne Brown has been a contributing writer at KSL.com for many years with a focus on sharing heartwarming stories.

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