2 Little Girls’ Rare Genetic Disorder Reconnects Old Friends
CBS Minnesota (con't)
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MINNEAPOLIS (WCCO) — It is easy for Kelly McConville and Jeff Lee to reminisce about their youth. Both came from wrestling families, they competed together growing up, and were part of a national championship Greco Roman team in 1994. But as life often goes, they lost touch. What caused them to reconnect defies all odds.
“My daughter was 7 weeks old when she was diagnosed and we thought she was perfectly normal, so it was pretty shocking for us,” said McConville.
“Iris was 2 when we got her diagnosis of Williams Syndrome,” said Lee.
Both McConville’s daughter Hazel and Lee’s daughter Iris have Williams Syndrome. It’s a rare genetic disorder that affects about 1 in 20,000 births.
Children who have it are developmentally delayed and can have serious heart problems. Hazel had open heart surgery when she was just a year old.
There is a lighter side to Williams, however,
“There are some cool aspects of it. They are extremely outgoing and gregarious. They are friendly. They have no social fear whatsoever,” said Lee.
Lee and his family were living in Florida when Iris was diagnosed. They moved back to Minnesota, and one day through the Williams Syndrome Association he came upon news of a benefit for Hazel McConville. He recognized the last name immediately.
“I’m like, oh my God, we’ve never met another family in the world that has Williams Syndrome. And here is this guy that I’ve grown up with, I’ve known my whole life, our families are friends, we’ve competed together. And his daughter shares the same unique medical condition,” said Lee.
The random reconnection prompted McConville to ask a school mathematician about the odds of two childhood friends having daughters with the same disorder.
“It’s roughly about 1 in 20 million. It could be greater, but it just seems astronomical that that occurred,” said McConville.
Their wrestling days are long behind them, and now their lives have new priorities. Their families now lean on each other for support.
This weekend, they will take part in the second annual Walk for Williams. Last year, 600 people participated and they raised more than $16,000. It’s a walk that will once again create awareness — and hope.
“I just hope she just has a great life. She will probably always be really close to us, living with us, or in assisted-living home, but, yeah, we just want her to be happy and have a great life,” said McConville.
“I wouldn’t change a thing about Iris. We love her just the way she is. But my hope is that she is happy,” said Lee.
The Walk for Williams will take place tomorrow morning at Elm Creek Park Reserve in Maple Grove.