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Lyra makes the news!

Below is a news story about Lyra, one of my local little buddies with albinism who made her local paper. If you click through to the newspaper's story, there's a darling pic of Lyra!

A face in the crowd
Family fights myths associated with albinism


Lyra Thompson, 3, of Edwardsville, was born with albinism, a genetic condition that causes a lack of pigment in the skin, hair and eyes. Lyra’s family is hoping to dispel myths about albinism and help Lyra live a happy, self-confident life.

By Nicole Kelley
August 6, 2009

The routine is simple. Before Lyra Thompson can leave her house, sunscreen must be applied and sunglasses, and a hat must be in place.

She’s 3-years-old now, and the routine has been instilled in her from an early age. But it’s not an overprotective mother or the fear of skin cancer that has Lyra being so careful.

Lyra is a child with albinism, a genetic condition that affects the amount of pigment in her skin, hair and eyes. Her lack of pigment has given her white, almost clear hair, fair skin that could burn easily and blue eyes that are more sensitive to light than others.

To read the full story go to: http://www.bonnersprings.com/news/2009/aug/06/face-crowd/

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