It wasn’t sad: Enjoying an impromptu get-together at the second Wolf-Hirschhorn reunion are (from left) Stephanie H., Wanda H., Christopher H., Craig R. (partial hidden), AJ G., Christine G., Justin F., Kelly G., and Brian J.
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.
Sometime these histories proved medically valuable as the experiences of others alerted “newer” parents that their children were at risk of developing seizures, curvature of the spine and eye disease.
The biographies also provided feelings of connection and hope. Parents discovered that other children with the syndrome also loved 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.”
Is this going to be sad?
But Christopher’s father wasn’t sure he really wanted to spend time with other families affected by his son’s syndrome. “Is this going to be sad?” he asked upon arrival at the group’s second Reunion.
Sara Wood, on of the event organizers, flung open the door to her family’s hotel room. Inside were various members of four families – children with the syndrome, parents, siblings and a grandmother. The sounds of laughing, non-stop talking and children playing could be heard. Scattered about were suitcases, wheelchairs, photo albums and toys. “Does this look sad” Sara asked.
The event, held in Asheville, North Carolina, drew families from as far away as California, Canada and Germany. Michelle, 23, was the oldest person with the syndrome at the reunion – she had been diagnosed only in the past year. Anthony, the youngest child, was 21 months old. Also attending were one foster family, two adoptive families and one family whose infant with the syndrome had died.
What a support to be with others…
The event gave families a chance to ask questions and share experiences. One mother probably summed up the experiences of many – “After I was here a little while, I just started crying… I can’t tell you how happy I am that I came – just to see the other children, to see their ages, to meet their families. They feel like friends I have known all my life… What a support to be with others who also appreciate and love their children!”
And Christopher’s father? He left the reunion with a smile on his face and said, “It wasn’t sad.”
-Christine N. Kleimola
Christine Kleimola is the adoptive mother of Rachel Melinda, 5. Christine and Rachel live in Ypsilanti, Michigan.
*This article appeared in the Exceptional Parent magazine, January 1995, page 26.