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Emaleigh's Story

Emaleigh

Emaleigh was born at Virginia Baptist Hospital in Lynchburg, Virginia after only 28 weeks and 1 day of pregnancy on October 10th 2009 weighing 2 lbs 11 oz. Her stay in the NICU was for 79 days. She has a twin brother that is 1 minute older with no congenital syndromes. Abnormalities were discovered with Emaleigh’s feet during the standard second trimester ultrasound, although the extent of her malformations were not fully recognized until after birth. Unable to obtain a diagnosis, we began researching hospitals that specialized in Overgrowth disorders. After traveling to Boston Children’s Hospital in April of 2010, Emaleigh was officially diagnosed with CLOVES Syndrome.

In the summer of 2010, doctors began analyzing Emaleigh’s Overgrowth tissue by performing a surgery to remove a small lipoma (Non-Cancerous Soft Tissue). After the biopsy was performed, doctors were able to assess the risks for future tissue excising and decided on an “as needed” or “Medically Necessary” approach for future lipoma excisions. In November 2010, Emaleigh underwent her second surgery, Orthopedic in nature, lasting five hours. The primary purpose of the surgery was to help restructure Emaleigh’s feet to enable her to fit into shoes in order to help promote her ability to walk. In January 2011 Emaleigh underwent a full body MRI screening to eliminate the possibility of potential lesions, growths, or tissue problems (primarily in her chest cavity) while also evaluating the extensive overgrowth on her right buttock and leg. With a limited number of cases worldwide (approximately 50), doctors have few treatment options at this time. Fortunately, Emaleigh’s MRI was negative, other than a large left kidney. Doctors continue to monitor her growth and lipoma’s regularly.

November 14, 2011, Emaleigh will underwent her 3rd surgery, again, orthopedic in nature. We assumed this surgery would happen closer to the age of 8 but because her feet are growing rapidly, we need to move forward with this surgery, the "sooner the better". This surgery will remove all toes and metatarsals on "both" feet. They will also be removing some of the lipomatous tissue (fatty tumors) and moving the tendons to the bones that are left in the feet. Right now Emaleigh is in the same size shoe that a 6 year old child wears.

In late November of 2011 after her 3rd surgery, we opted for her routine ultrasound as we were leaving the hospital. The next 6-8 weeks we found that she was the first CLOVES patient diagnosed with Wilms Tumor (both of her kidneys were affected - bilateral kidney cancer). After 18 weeks of chemotherapy (Vincristine & Dactinomycin), and a left kidney nephrectomy she was cancer free.

Over the years we've had a few scares with hip dysplasia, solitary kidney issues, shoe problems, and unique "Emaleigh" issues. We are glad to say "Stable" and "Cancer Free".

Moving forward we should expect the following treatments:

  • Manage nutrition as needed.
  • Adding a shoe lift for her leg length discrepancy.
  • Debulk her right buttock (Emaleigh is not interested in this procedure)
  • Monitor for Scoliosis
  • Growth plate manipulation to stop the bone growth in her right leg and left foot.
  • Excision of the lipomatous mass and damaged right breast tissue.
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