Behind her smile of gleaming baby teeth and her bright, sparkling eyes hides a deadly disease. Sweet Iris has a rare condition; one she can barely pronounce—juvenile GM1 gangliosidosis.
Yet this six-year-old is bringing people together from across the globe to help raise money and find a cure, according to a social media site.
Juvenile GM1 gangliosidosis is a degenerative neurological condition that destroys nerve cells in the spinal cord and brain. It is similar to Parkinson’s and Alzheimer’s disease. Children fighting the disease eventually lose the ability to speak, swallow, and move their limbs. Deafness and blindness can occur. The only medicine available that could possibly slow the disease is not FDA-approved for this use.
For Iris and her family, their journey began in August 2013 when they received the news of her diagnosis. With normal milestones behind them, her parents were completely unprepared when they first heard about juvenile GM1 gangliosidosis, and its bleak prognosis for the future.
Desperate for information, they reached out to social media. Finding little information or centralized fundraising for research, they developed their own social media outlets and quickly found a following from other families seeking support.
Sweet Iris became the resource and battle cry for families struggling with juvenile GM1 gangliosidosis.
The Sweet Iris Facebook site provides followers with the latest news on scientific developments and research papers, fundraising events, video, and photos. It is a nurturing place of hope and support for parents and families wanting to learn more about the disease and patient advocacy opportunities. The website also tracks the disease progress for Iris and other children.