BERKELEY (CBS SF) — A Berkeley couple has raised nearly $200,000 through social media to help their 6-year-old daughter who suffers from an extremely rare medical condition.
Douglas Dooley and Christine Waggoner’s child Iris suffers from a degenerative neurological condition called GM1 gangliosidosis believed to affect only 1 in 300,000 individuals. The disease worsens with time, making it difficult to know what the future holds.
“We hope Iris will live many more years, perhaps into her teens or even her twenties,” the parents wrote on Iris’ website. “But we do not know how her quality of life will be maintained. If there were a choice between quantity or quality, what would one choose? We know the inevitable course this disease takes. There are no guarantees. We cherish every moment and we take nothing for granted.”
In only 2 months, the family has raised nearly $200,000 to fund medical research for a cure for GM1. The only medicine currently available could possibly slow the disease, but it’s not FDA-approved for this specific condition. There are no other treatments available other than comfort measures and symptom management.
The highest donation to date was made anonymously and was a $100,000 donation. The family said they plan to donate all funds to cutting edge gene therapy research being conducted at Auburn University in Alabama.
Researchers hope to initiate a clinical trial in humans possibly as early as 2016 given adequate funding.
More information on how to donate here.