Nelson Star, November 06, 2013

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Vol. 6 • Issue 37

Wednesday, November 6 • 2013

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From Benjamin Moore

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Nelson families share their experiences

Dealing with Down syndrome

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KIRSTEN HILDEBRAND Nelson Star Reporter

Two Nelson families are sharing their personal stories with the hope of raising awareness about Down syndrome during a week intended to do just that. November 1 to 7 is Down syndrome awareness week. Also known as trisomy 21, it is a genetic disorder, occurring at conception, caused by the presence of all, or part of a third copy, of chromosome 21. In the last 2.5 years, six children with Down syndrome have been born in Nelson which is far more than statistics would predict. One in 800 live births is more the norm. Jillian and Aaron Colbert

are busy parents of three little children with Jack being the youngest at six-and-a-halfmonths-old. Jack was born with Down syndrome and in a few short months, the couple has educated themselves about a complex situation that’s part genetics, part health care and part social acceptance. At this point, the little boy’s health conditions associated with the chromosome abnormality are causing the greatest worry. He was hospitalized for three-anda-half weeks after birth and has slowly been weaned from weekly doctor appointments. “If Jack had been my first, I probably would have gone crazy

“In the last 2.5 years, six children with Down syndrome have been born in Nelson.”

Jillian and Aaron Colbert with son Jack who has Down syndrome. The couple is sharing their story in hopes of raising awareness about the genetic disorder. The couple believes that knowing helps with understanding. Kirsten Hildebrand photo not knowing what to do,” said Jillian. He was born with an imperforate anus and a congenital heart defect, despite showing no signs of this during ultrasound. Jack has had the first of three surgeries to help mend his bowel defect and on August 21, he had open-heart surgery. Now that he has regained his strength, he has two more bowel surgeries upcoming. Having two children already has also helped the parents know to trust their instincts despite some outdated medical advice. “Jack wanted to start solids — he was noticing food,” said

Jillian. They were advised to wait by doctors because people with Down syndrome can sometimes choke or inhale their food. They were told in a year’s time, he would be enrolled in a program for people with eating disorders. Said Aaron slyly, “So to prevent him from choking they’re going to give him an eating disorder.” Jillian is also successfully breastfeeding Jack despite being told this would be difficult. These are just a couple examples of the couple’s experiences with a stigma that still exists — even among medical experts. Jillian and Aaron say they understand why this vein of

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thinking is still out there — lack of knowledge. “When Jack was born we both kind of knew there was something different,” said Jillian. “I kind of knew it was Down syndrome. I don’t know how because I didn’t know what it was except for all the misconceptions I’d heard.” The couple didn’t do any genetic testing during their pregnancy because Jillian is 24 and risk of occurrence increases with age. “And we both agreed that it wouldn’t make a difference to us anyway,” said Jillian. But when Jack was born, the

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