Eielson family to be featured in video shown at Time Square

  • Published
  • By Glyn Gardner
  • 354th Fighter Wing Public Affairs
EIELSON AIR FORCE BASE, Alaska --  A local Eielson family will appear on the big screen in Time Square on Sept. 30, 2007, as part of a 40-minute video presentation by the National Down Syndrome Society that will be seen on the Newscorp Astrovision.

Eight-month old Kalleigh Young, daughter of Judy and Tech. Sgt. Daniel Young, 354th Maintenance Squadron, was born with Down syndrome, a genetic disorder which will affect every organ in her body, most notably her brain. Down syndrome is the leading cause of mental retardation in America.

Though her life will undoubtedly be more challenging than the average person, Kalleigh has a good chance to live a happy and productive life; today, people with Down syndrome are achieving more with advances in the health field and better educational opportunities

That is the message that the NDSS will convey during October, National Down Syndrome Awareness Month.

"We want to show that people with Down syndrome can be successfully included in community activities, education and employment," said Sarah Schleicher on the NDSS official Web site. Ms. Schleicher is the NDSS vice president for marketing and communications.

The video presentation shown in New York City will show children, adolescents and adults who are affected by Down syndrome working, playing and learning with family and friends.

Kalleigh's picture was one of 2,500 received by the NDSS, and will be one of nearly 215 shown during the presentation. Her parents found out about the search from an online message board.

"The support here is a pretty limited," said Kalliegh's mother Judy. "I haven't found a Down syndrome support group in the Fairbanks area. We get most of our support online, mostly from message boards. However, there is a New Parent's Support Group here on base that checks on me from time to time."

This isn't to say they don't have a lot of support.

"We've received all the help and support we could ask for."

When she was born last December, the Pediatrician on-call noted several physical characteristics that made her suspect Down syndrome.

The pediatrician spoke about the single crease across her palms, her flat nasal bridge, small low-set ears, and poor muscle tone, she said.

"My husband and I just looked at each other--I didn't really have a reaction," said Mrs. Young.

Then the hard part began. Kalleigh had to undergo several tests, including an echocardiogram to test for a common heart problem and genetic testing to confirm the diagnosis of Down syndrome.

Fortunately the echocardiogram came back normal.

"Thankfully her heart was perfect--further pushing us into denial of a diagnosis," said Mrs. Young.

However, the family was a bit overwhelmed by the genetic diagnosis of Down syndrome.

"My first thoughts and worries were: Will she ever know intimacy and love outside of us? Who will take care of her when we can't? How will this affect our other kids?"

Their pediatrician helped.

"He reminded that she was just a baby and did all the things babies do and needed all the things babies need," she said. "He went on to remind us that no one knows what the future holds for any child. Kalleigh could surprise us and do something that will pay for our retirement."

"My husband told me that it didn't matter why or how," said Mrs. Young. "That it just is and we'll deal with it. Hearing all this helped me focus on the here and now."

Early intervention is the key to allowing children like Kalleigh reach their full potential. Kalleigh is being seen by a civilian occupational therapist in Fairbanks several times a month.

She's also under the care of a pediatrician at Bassett Army Medical Center. People with Down syndrome are more prone to getting a wide range of medical problems from ear infections to heart conditions.

"Most parents we've spoken too agree," said Mrs. Young. "The Down's syndrome we can deal with. It's the other medical problems that scare us."

So far, Kalleigh hasn't developed any other health problems. Her mother claims she is healthier than some "normal" children her age.

That's not to say she isn't delayed. She isn't sitting up yet or crawling. However, she is trying.

One problem children with Down syndrome have is a lack of muscle tone. Though she isn't sitting or crawling, she has figured out that rolling around will get her from one place to the next.

Having a child with Down syndrome has been a sort of blessing for the family, said the mother.

"This diagnosis has drawn people into our lives who are positive while pushing the negative ones away," said Mrs. Young. "It is almost like a filter."

She has brought so much joy into all of their lives. Her older sister and brother, Reagan and Camden (who are 4 and 2 years old), bonded with their baby sister immediately.

"People can be cruel, ignorant, and just plain thoughtless," she said. "We've had no real negative reactions to her diagnosis yet but I am trying to brace myself for when it happens."