CHICAGO (WLS) — An $11 million gift was given in the fight against rare genetic diseases.
Lurie Children’s Hospital in Chicago’s Streeterville neighborhood is celebrating a donation that will help provide faster, up-to-date testing and treatment for young patients.
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There were cheers Wednesday for what could be possible to help children with rare genetic disease.
“A program like the Edwards Division of Genetic and Rare Disease can feel like a miracle, and boy do we need to feel miracles today,” Gov. JB Pritzker said.
“We will bring the latest genetic sequencing technology to Lurie Children’s; we can find answers for families,” Dr. Carlos Prada said.
Lurie Children’s Hospital officially announced an expansion of research with the $11 million from Don and Anne Edwards, who call themselves grateful parents of Lurie.
“Lurie can be the place that leads in the development of tests and therapies that can save lives of thousands of families and children,” Don Edwards said.
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Joining the Edwards Wednesday were other families and patients who have seen the difference genetic therapy can make.
“We received life-changing care, and now with this gift, offers answers and treatment and options to so many other families,” Beth Robinson said.
Vivienne, 5, is currently getting treatment for a genetic disorder that typically does not allow the patient to survive childhood.
“She’s a lot more happy, a lot more active, a lot more alive, and I’m really thankful because now a lot more families will be able to experience that,” sister Veronica Lopez said.
“It’s literally changed my life forever,” 22-year-old patient Emmanuel Kasongo said.
Kasongo got treatment for sickle cell, and has been free of bouts with the debilitating disease for a year.
“Having chronic illness like that is not easy. And children having access to that and fully being able to live out their childhood, it’s something I would have wished for. And I’m really glad they have the opportunity now,” Kasongo said.
Kasongo said he looks forward to seeing the advances, as his younger sister also has sickle cell.
Dr. Prada expects to have 75 trials running by 2030.
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