After losing her daughter to a rare disease, a Loudoun mother gives back to children like her
The 5-year-old suffered from a rare and fatal disorder called Cockayne Syndrome that causes growth failure, impaired nervous system development, sensitivity to sunlight and many symptoms associated with premature aging. There is not much known about what causes the syndrome or how to slow it from progressing. Clark died in 2006, but her mother, sisters and friends are still giving back to the CS community.
Her mother, Jackie Clark, is now president of the Share and Care Cockayne Syndrome Network, the first and largest group dedicated to finding answers about the disorder.
Each year Clark organizes an international conference in D.C., bringing together children with CS, their families, doctors and researchers working to find a cause and eventually a cure.
“Every year it fills me up so much,” said Clark about the conference. “It makes me so happy to be able to help other kids.”
Since the disorder is extremely rare, most families trying to treat the symptoms have difficulty finding doctors who know anything about it, said Clark. Families come to the conference not only for support but to share what treatments are working for their children and to hear about new research.
Many families find themselves in hundreds of thousands of dollars of debt in medical bills, said Clark. Every time their child has a flare-up like kidney failure, symptoms of Parkinson’s disease or a spike in blood pressure, parents take them to the hospital to try to ease their suffering. They would rather go into more debt than see their child in more pain, said Clark.
When Gigi Clark was born in 1999, she had congenital cataracts and was completely blind in both eyes.
“The doctors kept telling us, 'Other than that, she’s fine,'” said Clark. “They kept telling us the same thing with everything that we kept discovering was wrong with her, like her not growing and losing her hearing.”
Clark said she knew something was seriously wrong when her daughter couldn't gain any weight.
“By the time she was 5 she was down to 11 pounds and she was in a lot of pain,” said Clark. “Those answers weren’t good enough anymore.”
Clark was told by doctors whatever was wrong with her daughter, it was so rare they couldn't diagnose her. They told her whatever the problem was, it was not genetic.
“It was probably a blessing that I didn’t know it was genetic,” said Clark. “If I had known I had a 25 percent chance my other children would have the syndrome I wouldn’t have taken the gamble. But I had two more kids and they, fortunately, came out healthy.”
By the time Gigi was diagnosed, her health was declining rapidly. Clark was told this was normal for the syndrome.
The mother says she wishes she had known sooner what was wrong with her daughter. She says there are things that could have been done to help her live a little longer and give her a better quality of life.
“There were other things I missed out on. Like family pictures,” said Clark, breaking down in tears. “I used to always think, she’s not feeling well. When she gets healthy we’ll do it. We’re going to wait for that family photo.”
Once Gigi Clark was diagnosed, her mother immediately hired a photographer to get the family photos she had been waiting five years to take.
Clark first heard about the Share and Care network right after her daughter was diagnosed. The family was able to go to the conference in Montage, N.Y.
“Gigi couldn’t fly at that time because she was on oxygen from pneumonia,” said Clark. “So we sold our car and bought a conversion van so we could take her with all of her equipment so she could meet other kids like her.”
Gigi died a few weeks after the conference. Her mother takes comfort knowing she was able to be with other kids like her in her final weeks.
“There’s an instant bond between the CS kids when they see each other because there’s no other syndrome that looks like them,” said Clark. “When they see another child that looks like them that they’ve never seen before in their lives, they light up and hug each other.”
Clark began a local foundation in her daughter's memory to raise money and awareness about CS. Because of her work, the Share and Care network asked Clark to fill in as its president. Over a decade later, Clark is still president. She says she knows she's helping other children and families dealing with CS give her life purpose.
“I know how hard it is,” she said. “When I talk to them and tell them my story, it helps them.”
Clark says she loves being around children that look and sound like her lost daughter.
“I love to hold them,” she said. “They just remind me so much of my daughter.”
Clark's daughter, Lizzie Clark, a Woodgrove High School student, says she has befriended many children with CS at the conferences.
“It’s cool seeing people that remind you of who you’ve lost,” she said. “It’s a really great experience.”
Clark says her daughters' strength and compassion for others surprises her every day.
“When my kids find out someone lost a sibling, my kids care. They try to help other kids deal with loss,” she said. “They have done really well. I’m so proud of them.”
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