Bridgeport family raises awareness for rare infant disease

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BRIDGEPORT -

The Bridgeport family of deceased 6-month-old Keidy Marie Lainez is sharing their tragic story one year after a rare disease claimed the life of their daughter.

State and local leaders, along with loved ones and friends, came together outside the family's home in a show of solidarity.

Keidy Marie died last year of a rare autoimmune disease called hemophagocytic lymphohistiocytosis.

HLH mostly affects children like Keidy Marie who are under the age of 1-year-old. HLH prevents the immune system from working properly and results in certain white blood cells attacking other blood cells.

MORE: Bridgeport mother marks 1 year since daughter's death with fundraiser

"It causes a hyperinflammation of their lymph nodes and lymphocytes,” says Dr. Max Rosenburg. “It's a very tragic thing and we're hoping to stamp out this disease within our lifetime."

Keidy Marie’s uncle Jairo Martinez describes bouts of bleeding that was very difficult to see. He recalls a lot of grieving and visits to the hospital.

"I think one of the most vivid memories that I have is during Mother's Day she actually opened her eyes for the first time in a few days at the sound of my sister's voice,” he said.

Last night in Bridgeport, the Keidy Marie Foundation held a fundraiser as part of an effort to kick off a movement of research and early detection.

Organizers say they'll use the funds raised to help the families of other children like Keidy Marie who are currently suffering the most painful ordeal of their lives.

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