DISABILITIES

HOMEPAGE: www.danieljvance.com


By Daniel J. Vance


In 1965, English physician Harry Angelman came across in his medical practice several children that seemed to have identical challenges, such as severe mental delay, a puppet-like walk, almost no speech development, and a constant happy countenance. He would name his find, “Happy Puppet syndrome.”

Today, doctors worldwide refer to his discovery as Angelman syndrome, which affects at least 1,000 Americans. Medical researchers have learned the syndrome is caused by missing genetic information on a chromosome.

“Children with Angelman syndrome start out normal,” said 30-year-old Amy Clark of Batavia, Illinois, at a recent Joni and Friends Family Retreat I attended. Clark and her husband have two boys with Angelman's: Brandon, 9, and Timothy, 4. “These babies with Angelman laugh, laugh like crazy and rarely ever cry. They are smiling, laughing, giggling, an absolute joy to be around. But as time goes on you realize they aren't developing like other children.”

A physical therapist by occupation, Amy Clark in time noticed that Brandon wasn't rolling over at the appropriate age and later wasn't crawling or walking. He also wasn't feeding himself or speaking. His head size seemed small.

Brandon didn't begin walking until age 3, and Timothy until recently. The Clarks didn't learn until after Timothy was born that each of their children had a 50 percent chance of acquiring the syndrome. They have a 6-year-old daughter without it.

Children with Angelman syndrome also usually have a serious sleep disorder, which of course directly affected Clark. “For years, because of Brandon I probably had only an hour or two of sleep daily,” she said. “Though not seemingly possible, I know I didn't get more sleep than that. I was a zombie. It took five years before a neurologist would prescribe sleep medication for Brandon.”

She said she couldn't nap during the day “because Brandon didn't nap.” He typically slept only 45 minutes between 10 and 11 at night, and again, about two hours from 6 to 8 in the morning.

In addition to this physical strain, early on she received a lot of verbal flak from people questioning her parental ability to control Brandon's erratic behavior.

Due primarily to the stress, she and her husband separated and only recently have they made strides toward reconciling their marriage. Today, she said she is somehow getting through it all “by God's grace.”

For more, see danieljvance.com or www.ninds.nih.gov. [This column made possible by a grant from Blue Valley Sod, www.bluevalleysod.com]