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Carol Stream, IL —
When Carol Stream resident Sandy Kurby’s infant son, Joshua, was diagnosed with CHARGE Syndrome, she had to research what it was about.
The diagnosis led Kurby to organize a 5K race, Charge for CHARGE, that will be held at 8 a.m. Saturday in Carol Stream’s Armstrong Park to raise money after it claimed the life of her son when he was just 9 months old.
CHARGE is a genetic pattern of birth defects that affects about one in every 10,000 births.
Even though Joshua died as a baby, his twin brother Joey, is now 3 years old and healthy.
“When I found out one of my sons had CHARGE, I found the CHARGE Syndrome Foundation,” she said. “They have all the research and do all they can with educating people about CHARGE Syndrome. There are a lot of children in the area that have it, but people just don’t know about it.”
Kurby and her family have arranged a 5K race for the last three years and donate all the proceeds to the CHARGE Foundation based in Sands Point, N.Y.
Last year, Kurby said the race raised just under $5,000. She said the goal this year is breaking $5,000.
“The foundation has been very supportive of not just mine but other families that have CHARGE,” Kurby said. “They’ve been instrumental in dealing with the medical needs that we’ve had.”
Kurby said giving birth to newborn twins, and having a son was diagnosed with CHARGE, was challenging and emotional.
Joshua underwent several surgeries in eight months and was admitted to the hospital for the first 126 days of his life.
“Starting a new family and the chaos of raising newborn babies was definitely chaotic,” she said. “We had to deal with everything as it came.”
Kurby said she hopes the CHARGE 5K event will continue to raise awareness for the syndrome.
“People with CHARGE Syndrome need a lot of support both emotionally and medically,” she said. “They have a lot of challenges set before them but they are the most headstrong and determined parents that you’ll ever meet.”
When Carol Stream resident Sandy Kurby’s infant son, Joshua, was diagnosed with CHARGE Syndrome, she had to research what it was about.
The diagnosis led Kurby to organize a 5K race, Charge for CHARGE, that will be held at 8 a.m. Saturday in Carol Stream’s Armstrong Park to raise money after it claimed the life of her son when he was just 9 months old.
CHARGE is a genetic pattern of birth defects that affects about one in every 10,000 births.
Even though Joshua died as a baby, his twin brother Joey, is now 3 years old and healthy.
“When I found out one of my sons had CHARGE, I found the CHARGE Syndrome Foundation,” she said. “They have all the research and do all they can with educating people about CHARGE Syndrome. There are a lot of children in the area that have it, but people just don’t know about it.”
Kurby and her family have arranged a 5K race for the last three years and donate all the proceeds to the CHARGE Foundation based in Sands Point, N.Y.
Last year, Kurby said the race raised just under $5,000. She said the goal this year is breaking $5,000.
“The foundation has been very supportive of not just mine but other families that have CHARGE,” Kurby said. “They’ve been instrumental in dealing with the medical needs that we’ve had.”
Kurby said giving birth to newborn twins, and having a son was diagnosed with CHARGE, was challenging and emotional.
Joshua underwent several surgeries in eight months and was admitted to the hospital for the first 126 days of his life.
“Starting a new family and the chaos of raising newborn babies was definitely chaotic,” she said. “We had to deal with everything as it came.”
Kurby said she hopes the CHARGE 5K event will continue to raise awareness for the syndrome.
“People with CHARGE Syndrome need a lot of support both emotionally and medically,” she said. “They have a lot of challenges set before them but they are the most headstrong and determined parents that you’ll ever meet.”
