Avera Medical Minute: CHARGE Syndrome - KSFY News - Sioux Falls, SD News, Weather, Sports

Avera Medical Minute: CHARGE Syndrome

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Kristin, Andrew and Brian Knutson Kristin, Andrew and Brian Knutson

Friday April 17th is the 10th Annual Big Grape at the Avera McKennan Fitness Center. It's billed as the premier wine tasting event of the year, but its purpose goes far deeper than any wine glass.  The proceeds from the event benefit pediatric patients and their families at Avera Children's Hospital and Clinics. We met one family from Sioux Falls who calls Avera McKennan their second home.

5 year old Andrew Knutson's favorite time of day is when big sisters Kayla and Sarah get home from school. Then it's family time.  Andrew was born with CHARGE syndrome.

Coloboma of the eye
Heart defects
Atresia of the choanae
Renal anomalies and retardation of growth and/or development
Genital anomalies
Ear abnormalities or deafness

It's an acronym that boils down to a number of birth defects that cause a number of problems for their heart, airway, hearing, eye site and & development.

Dad Brian says, "The problem with his development is it's hard to learn when you can't hear and you can't talk."

No two children with CHARGE have the same degree of problems. For Andrew his biggest challenge has been his airway. He had airway reconstructive surgery 2 years ago. That was just one of 30 surgeries this little boy has gone through.

Mom Kristin says, "The nurses on the pediatric floor I consider my friends."

And when he gets sick, from something as common as a cold, it affects him severely. He's been in the hospital 8 times this winter alone.

Kristin says, "He gets everything a degree worse than everyone else. It's meant Andrew and I are home all the time. I get out when someone is here to be with Andrew. The only time he leaves the house is to go to the doctor or an unfortunate hospital visit. It's meant I've missed the girls soccer games and skating programs. This is what we deal with because it keeps him safe and the healthiest when he's home."

They've basically changed their house into their own little resort with an indoor pool and an inside walkway. Since they can't go anywhere they invite people here.

Brian says, "We've basically had to find our own normal. We travel far less than we used to because of his airway issues. If he is exposed to illnesses he spends more time in the hospital so we try to minimize that as much as possible. We are grateful to have great friends and family who have helped us too."

Kristin, "Everyday we wake up thankful for him. We are lucky God brought him to us and we are lucky enough to be his parents."

And they are thankful for the care, support and love they're received at the Avera Children's Hospital. A place the Knutson's say is now well versed in "Andrewology".

Andrew was named the February Avera Children's Champion of 2009. It's a program that rewards brave little patients every month with a gift card and presents.  It's funded through The Big Grape. You can get tickets to at JJ's Wine, Spirits & Cigars or call (605) 322-8900 or go online at www.TheBigGrape.com

 

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