An Austin mother has taken it upon herself to spearhead a fundraiser to aid research into her son’s life-threatening condition, Sanfilippo syndrome. Alina Gorniak is working tirelessly to collaborate with Everlum Bio Rare Disease Lab in the hope of discovering a treatment that could, to some extent, help manage her son's symptoms or prolong his life. Gorniak’s seven-year-old son, Simon Croke, is currently enduring around 20 hours of therapy each week due to the disorder, which causes severe developmental delays and often results in the child's early death, as reported by KVUE.
An Austin mother is raising money for research for her son’s rare deadly disease. She’s hoping it could improve the quality of her son’s life or extend it. You can see the auction items here >>> https://t.co/MvMqWEiUvj pic.twitter.com/ZqzZIS4Vnr
— Eric Pointer (@EricPointerTV) December 12, 2023
Gorniak is calling on her Austin community for support. "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. I'm asking for the support of my fellow Austinites to help me. I cannot do this alone,” according to KVUE.
