Iris is a strong and sweet girl. She wrangles with her little brother Carter on a regular basis, as any big sister should. She has a beautiful smile and a contagious giggle. She loves orcas, dolphins and a good laugh.
In August 2013, her mom and dad experienced every parent’s worst nightmare. Iris was diagnosed Juvenile GM1 Gangliosidosis at age 5 following a diagnostic odyssey beginning at age 3. Iris’ development appeared mostly normal throughout her toddler years, despite seemingly minor troubles with speech and her motor skills. She had difficulty pedaling her tricycle. As a baby, she had a slightly exaggerated startle reflex. Recently, there is now evidence that the disease impacts her learning.
Iris fights GM1 everyday. She attends a mainstream elementary school and she has a varied array of after school activities and therapies. Her family tries to live each day to the fullest in the face of a relentless, progressive, and degenerative condition.