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Learning a lesson in parental love
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EE Times


BURGE_FRANK

Barbara and I, along with our daughter, her husband and six of their seven children, attended The Magic Foundation for Children's Growth conference in Chicago the last weekend in July. Our daughter's almost-3-year-old son Matthew suffers from a rare disease called Russell-Silver Syndrome, a form of dwarfism, a growth deficiency. Matty is tiny, skinny, wears a hearing aid in each ear and has a feeding tube implant since he does not have much of an appetite. But he is just about the happiest kid you'll ever meet and he can hold his own with his 4-year-old brother. The doctors say Matty is lucky to be in such a large, nurturing and loving family where he's just one of the brood. Love works magic.

The Magic Foundation was organized in 1989 by five mothers who each had a child with a rare growth hormone deficiency. Three of the mothers were from Illinois, one from California and the other from Oklahoma. They ran their phone bills through the roof, sharing details of their children's medical treatment. Today this foundation, built on parental love, is recognized as the world's largest organization for growth disorders. This year's conference attracted 114 families from 30 states and seven countries. Four families came from Canada, two families traveled from New Zealand, others came from Peru, Mexico, Italy, Ecuador and Belgium. And doctors who specialize in this disease consulted with 86 patients. "Children have a short time to grow and a lifetime to live with those results," The Magic Foundation says. But there is hope.

One evening there was a dance, and all the families turned out. The little ones were flashing their feeding tubes at each other and when the music started most of the kids hit the dance floor. A few moms joined the festivities but the rest of us gathered round and watched the giggling kids twist and shake. One mom brought her young daughter to the dance floor a few feet from where I was standing and asked one of the older kids to take her daughter's hand. The maneuver wasn't going very well until the mom said, "You have to grab her hand, she's blind." Tear time.

Every day we're bombarded by bad news about terrorism, drugs, corporate greed and corruption, the rush to low-cost labor in other lands and the growing number of men and women who have been laid off. Has the world gone mad, doesn't anyone care? But what we don't read about is the good news about millions of parents around the world who care a bunch and are struggling to raise their families in what they hope will someday be a better world. Mothers and fathers with seriously or terminally ill children have a particular challenge. But day after day they plug on, nurturing their families with kindness, hope and love. Love does work magic.

Frank Burge is a contributing columnist for EE Times. He can be reached at fburge@cmp.com.

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The views and opinions expressed in this column are strictly those of the author and should not be taken as an editorial position of EE Times or any of its other editors, publications or Web sites.


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