Austin family hopes son's love for basketball will help save his life
AUSTIN, Texas - An Austin family is hoping sharing their son’s passion for basketball will help save his life.
Simon Croke has Sanfilippo syndrome, a fatal disease similar to dementia, but in kids.
His parents say they need the public’s help to bring him one step closer to a cure.
FOX 7 Austin first introduced you to Simon last month. He is a basketball "pro" for his age with a heart of gold. His parents hope sharing his story again will help save his life.
'It's like Alzheimer's for children': 5-year-old in Austin has Sanfilippo Syndrome
According to Cure Sanfilippo Syndrome, this is a rare and fatal disease that is the result of a missing enzyme deficiency that causes toxic storage to build up in the brain. It is like Alzheimer and Dementia, but in children.
"Our sweet Simon and his basketball skills. He has extraordinary skill for shooting hoops which is not typical of any child at the age of five-years-old, but especially for a child with Sanfilippo Syndrome," said Alina Gorniak, Simon’s mom.
Simon was diagnosed with Sanfilippo Syndrome when he was only two-years-old. It is a fatal neurodegenerative condition with no cure and is very similar to dementia, except in children.
"Kids with his condition plateau in their development as toddlers, typically, and then start losing their ability to talk, walk and eat," said Gorniak.
Since he was born, Gorniak’s full time job has been Simon’s mother. Every single day, she fights to save her son from this fatal disease, so he can continue his passion for shooting hoops.
"That will be erased if we don't find a cure for him soon. His abilities to walk, talk, and eat will be gone if we don't find a cure for him," she said.
She and her husband are on a journey to raise $1 million to support research pathways that are promising in helping kids like Simon with Sanfilippo Syndrome. Currently, they are on a mission to get 10,000 additional dollars in donations after an anonymous donor has promised to match it if they raise it in a month. A goal Alina says would bring them one step closer to helping Simon.
"To lose him is just, the thought of it, unthinkable, it's heartbreaking, to have folks supporting us in that fight to save his life means everything," she said.
Whether it is $10, $100, or $10,000, Gorniak says this could save her little boy’s life in the long run, and she’s thankful for that.
"It's amazing for them to empathize with us and think, ‘wow, I wouldn't want to lose that sweet boy either’," she said.
If you would like to donate to help Simon's family get that $10,000 match, donate at HelpSimon.com.
___
DOWNLOAD: FOX 7 AUSTIN NEWS APP
SUBSCRIBE: Daily Newsletter | YouTube
FOLLOW: Facebook | Instagram | Twitter