From Deseret News archives:
Children with trisomy
Parents gather in Salt Lake City for support, clinic
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While Elizabeth's parents, Janice and John, ask occupational therapist Jackie Swan what they can do to help her feed herself, the little girl amuses herself by squeezing a water bottle to hear it crinkle and groan, then dropping it to see who will retrieve it. "She likes to play fetch, if you haven't noticed," John jokes.
She was born with trisomy 13, diagnosed when she was a week old. She had an extra finger and toe on the right side, which they had removed to help her walk and use her hand. But she doesn't have "a lot of physical issues," says her dad: a small atrial septal defect that may close on its own and some kidney reflux. She wears glasses and hearing aids and will likely never talk. But she communicates. Mom knows instantly when she wants out of her wheelchair to crawl around, which she does with alacrity. When she's hungry, she scoots into the kitchen and parks in front of the fridge.
Mom Christine Donohue sounds like a doctor as she discusses issues with Carey. Like most of the parents, with time has come knowledge. Mary has had a lot of lung problems and they take extraordinary steps so a simple cold will not progress to something serious. But despite several oxygen treatments a day, her fingertips and toes are often blue.
Her vision challenge is tricky. She sees one eye at a time. But still, she plays, makes choices in school, supports her own weight and can take steps on her own. Although she can't walk down stairs, she walks up them. And she has "incredible abdominal muscles" and good hearing, although her ear canals are narrow.
She, too, has been basically healthy, hospitalized once in her life for sickness.
Mary's the middle child of five and her mom knew before she was born that she had the condition. But as too often happens, not much was provided in the way of information. She was referred to a support group for an entirely different chromosome defect, Down syndrome. They, in turn, told her about SOFT.
Lots of information about SOFT and the trisomies are online at www.trisomy.org.
E-mail: lois@desnews.com
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