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Colorado family who lost son to genetic disorder in October now helping others this Christmas

Arneson's lost baby Rodney to Jacobsen Syndrome
Posted at 5:25 PM, Dec 14, 2017
and last updated 2017-12-14 20:47:49-05

KIOWA, Colo. – Christmas is quickly approaching. For many families with sick children, this often means another holiday in the hospital.

Jennifer and Robert Arneson know the predicament all too well.

Their son, Rodney, was born with Jacobsen Syndrome. He battled the rare genetic disease for more than a year before dying just four days before Halloween.

“It's been a long 15 months watching him go through everything he went through,” the boy's mom, Jennifer, said.

This is the Arneson’s first Christmas without Rodney.

“Some days you struggle,” Rodney's dad, Robert, told Denver7.

The couple shared a story about Christmas 2016 -- one they spent in the hospital.

“Not even an hour of being admitted, we got this huge bag of toys that had been donated. Even though it was hard being there, it was nice to see other people caring,” Jennifer said. 

So, the two wanted to do something similar.

A fateful diagnosis

Rodney was diagnosed with Jacobsen Syndrome when he was between 23 and 25 weeks in the womb.

The condition is caused by a loss of genetic material from chromosome 11. In most patients, this impacts their development of speech and motor skills. Many see a delay in sitting, standing and walking.

The U.S. National Library of Medicine details other developmental issues:

Most also have cognitive impairment and learning difficulties. Behavioral problems have been reported, including compulsive behavior (such as shredding paper), a short attention span, and easy distractibility. Many people with Jacobsen syndrome have been diagnosed with attention deficit-hyperactivity disorder (ADHD). Jacobsen syndrome is also associated with an increased likelihood of autism spectrum disorders, which are characterized by impaired communication and socialization skills.

“He was more on the severe side of his health,” Jennifer said. “Despite everything he went through, he always had a smile on his face. He was always laughing. He just was truly amazing.”

The couple teamed with Trunks for Tots and Colorado’s Dodge Challengers Club. Travis Baker with Trunks for Tots told Denver7 the group has collected more than 5,450 toys for this annual event. Baker said more donations are coming in.

Drivers and volunteers will pack the trunks of their Challengers with toys, books and other items. On Saturday, December 16, they’ll drive to Children’s Hospital and distribute the presents to sick and injured children spending their holiday in the hospital.

The donations are being given out in the name of baby Rodney.

“I figured I have two options: either I can stay in bed and be miserable,” Jennifer described, “Or I can make the most of it, and make his legacy and who he was and just how amazing he is— sparkle and shine this holiday season.”

His parents mentioned Rodney is going to be making a lot of kids’ Christmases this year. “So, that makes us happy and that makes it worth it,” Jennifer said.

“When you see somebody that takes time out of their life to do something nice, it's enlightening,” Robert told Denver7. “I just hope that it just makes them smile. I mean, that would be good enough for me. It would break the monotony of being there.”

The Arneson’s spent Rodney’s first Christmas in the hospital. Now that they’re without him, the two are focusing on raising spirits and as they say, “surviving.”