Lafayette

Aug 21, 2014 6:17 PM

Family Organizes Event for Daughters Rare Disease

This Saturday, 9-year-old Paige LaCombe, her family and friends will unite to raise funds and awareness for a disease that has forever transformed the life of this Lafayette girl. In 2013, Paige was diagnosed with Stevens-Johnson Syndrome. Since then, the LaCombe family has dedicated themselves to shine a spotlight on this condition that results from adverse reactions to medication.

Stevens-Johnson Syndrome (SJS), a form of Toxic Epidermal Necrolysis (TEN), is a rare, sometimes life-threatening, immunological disorder of the skin. This condition is characterized by blisters that meld into one another to cover a substantial portion of the body (30% and more), and extensive peeling or sloughing off of skin. The exposed under layer of skin is red and suggests severe scalding. Often, the mucous membranes become involved, especially around the eyes, but also the mouth, throat, and bronchial tree.

Paige's family sought treatment at Shriners Hospitals for Children - Galveston. Specializing in pediatric care for children with burns, soft tissue conditions, and reconstructive and plastic surgery needs, Shriners Hospitals for Children - Galveston continues to successfully treat Stevens-Johnson Syndrome. The care and services for Paige while in Galveston were provided regardless of the family's ability to pay.

The LaCombe family has organized the Running to Spread Awareness 1K and 5K Run. The event will be hosted at Scott Park with registration from 7:30-8:30am and the run following at 9:00am. For more information, please visit www.sjslouisiana.com.

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