David Law and Veena Sison are faced with something no parent should be. They're in a fight to save their daughter's life. Violet just turned 2 years old. For the last year, they noticed Violet started to miss important developmental milestones; then came the seizures.
Violet was diagnosed with a life-threatening genetic disease known as GM1 gangliosidosis. With no approved treatment or cure, it is tragically always fatal in children. Soon, Violet may lose the ability to see, hear, and even speak.
"Losing skills is a big thing to look for and not to be lulled into complacency about, 'oh no every child develops differently,' they don't lose skills," said Christine Waggoner, President, CureGM1 Foundation.
Law and Sison have been overwhelmed by the support they've received. In under two weeks, they've raised more than a $100,000 through a GoFundMe campaign. And they've found a bit of hope.
The CureGm1 foundation was created to fund critical medical research, and clinical trials are underway with promising results. But it will take time.
"The ideal world is go to the doctor, you get diagnosed, they give you a treatment. We're not in that ideal world, unfortunately," said Waggoner.
"At this stage of the game, a lot of it is funding and awareness that really pushes the ball down the road," said Law. "What we have learned through all of this is despite how upset and heart wrenched we feel, we do you find a bit of hope and salvation by the way people reached out to us, giving us that strength to push on."
David and Veena are cautiously hopeful their daughter may be a candidate for available therapies in the future, giving her a chance at life.
A GoFundMe page has been established for Violet as she continues her battle.