Is This Going to Be Sad?: A "Wolf-Hirschhorn Family Reunion" Is a Time to Share Tears and Laughter

By Kleimola, Christine N. | The Exceptional Parent, January 1995 | Go to article overview

Is This Going to Be Sad?: A "Wolf-Hirschhorn Family Reunion" Is a Time to Share Tears and Laughter


Kleimola, Christine N., The Exceptional Parent


When Craig Richardson was diagnosed with Wolf-Hirschhorn syndrome, a rare chromosomal disorder also known as 4p-, his parents, Tom and Becky, were told he would not live long and would never do the same things as other children. Although the syndrome was extremely rare, Becky believed there had to be other families out there. Ten years ago, when Craig was three years old, Becky sent a Search letter to Exceptional Parent. Over the next six months, she received eight responses. Those letters marked the start of the Wolf-Hirschhorn Parent Network.

Connections and hope

Because so little was known about the syndrome, Becky's first initiative was to set up an information exchange. Parents were asked to submit a biography of their child in exchange for receiving biographies of other children.

Sometimes these histories proved medically valuable as the experiences of others alerted "newer" parents that their children were at risk of developing seizure disorders, curvature of teh spine and eye disease.

The biographies also provided feelings of connection and hope. Parents discovered that other children with the syndrome also love mirrors, balloons, music and motion. They learned that some do learn to walk, some can be toilet trained and even those with the most limited skills respond to love, enjoy rough-housing and unfailingly give the gift of a smile.

The group's first "get-together," held in Iowa in 1992, was attended by 25 families--mostly mothers and children. It was such a rewarding experience, they went home to encourage their husbands and other relatives to attend the next "Reunion. …

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