AUSTIN, Texas —
An Austin mother is holding an auction to raise money for research for her son's rare, deadly disease.
Alina Gorniak's 7-year-old son, Simon Croke, has Sanfilippo syndrome and goes through about 20 hours of therapy a week.
The disease causes developmental delays in toddlers and young children, and they ultimately lose important life skills. Kids diagnosed with the disease are more likely to die as a child.
Gorniak is calling on the community for help her prevent that outcome.
"I think any other parent would do what I'm doing. You would do everything that you can to fight for the life of your child,” Gorniak said. "I'm asking for the support of my fellow Austinites to help me. I cannot do this alone.”
Gorniak said there isn't a cure or a treatment for Sanfilippo syndrome, so she wants to work with Everlum Bio Rare Disease Lab in Austin. The lab's Small Molecule Drug Repurposing Program can see if there is an FDA-approved drug already available that could help her son's symptoms.
"This gives us hope as parents that we can improve the quality of Simon's life, or extend the length of his life," Gorniak said. "It would be a game changer because without it, unfortunately, he has already started his path of decline."
The items up for sale in the auction are on display at the OrangeTheory Fitness location on North Lamar Boulevard. The auction is selling goods, services, experiences, trips and other things.
You can also view the available items online.