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Emaleigh was diagnosed with an extremely rare congenital overgrowth disorder in 4/2010 called CLOVES Syndrome. Her condition has caused significant tumors in her lower body, very thin upper body, overgrown bones in her feet, leg length discrepancy, and large veins. Because of the overgrowth condition, she was at a 7% higher risk for developing Wilms Tumor, so recommended scans were performed every 3 months. Every scan we noticed a change in her left kidney, it was more than double the size of her right kidney, she had small classifications, and the wall of the kidney was very dense. After a bilateral foot amputation (metatarsal), during our routine Ultrasound, we noticed that two tumors formed in the left kidney. After the MRI and biopsy, she was diagnosed with bilateral Wilms Tumor (the first CLOVES patient) on 12/27/11. After 6+ months of Chemotherapy and a left nephrectomy, she is now cancer free and has been for 7 months.

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Emaliegh’s support page

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