Before little Simon Croke could even speak, he could shoot hoops like a professional basketball player.
Ball after ball, Simon was sinking every shot – much to the delight of his parents, Alina and Jeremy. Amazed, the proud parents grabbed their Phone(s) and began filming their son’s incredible skills.
But around the age of 18 months, Alina and Jeremy began noticing developmental delays in Simon and began to search for answers. “We didn’t know the devastation that awaited us,” the family said. GoFundMe pages read.
After a series of tests, Simon was diagnosed with Sanfilippo syndrome, a fatal degenerative brain disease in children which causes symptoms similar to those of Alzheimer’s disease.
“Today, Simon is still a happy and active little boy who likes to sink baskets. But all of this will go away without treatment or cure,” their GofundMe page says. “As the degeneration progresses rapidly, Simon will stop being able to shoot hoops, stop walking, stop talking, stop being able to feed himself. He will develop movement disorders and seizures, suffer from severe dementia, endure a lot of pain and suffering, and then he will die. All in the years to come. »
Now, Alina and Jeremy are sharing their son’s incredible talents in hopes of sparking interest in his story – and perhaps finding a cure for his fatal illness.
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We spoke with a Board-Certified Neurosurgeon and Forbes Health Advisory Board Member Dr Philip Stieg to learn more about Sanfilippo Syndrome.
“[Sanfilippo syndrome] is a pediatric genetic disease of glucose metabolism”. Dr Philip Stieg explained to In The Know by Yahoo. “Children with this syndrome cannot break down a sugar metabolite, which then builds up in their cells and creates symptoms. There are four possible mutations, which means there are four types of the syndrome.
According to Stieg, the signs of Sanfilippo syndrome don’t show up until children are between 2 and 6 years old. These symptoms include “speech delays, multiple eye, ear, and respiratory infections, behavioral problems, compulsive behavior and possibly seizures, severe cognitive problems, and loss of motor skills,” Stieg explained.
“Unfortunately there is no cure at present and it is a fatal syndrome,” Stieg continued. “However, there are currently promising clinical trials.”
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And it’s because of these promising clinical trials that Alina and Jeremy are desperately sharing Simon’s story online.
“Last spring, a film crew came to our residence to help share our fight against Sanfilippo Syndrome. We hoped that Simon’s amazing basketball skills would catch people’s attention and his smile would melt their hearts,” the parents explain on their GoFundMe page.
Now, with the help of the incredible basketball skills of their son and their TikTok Videosthe parents hope to raise the money that could save their child’s life.
“Our goal is to raise $1 million to help fund these research projects and give Simon a chance to grow, a chance to live,” their GoFundMe pages read. “We can’t just sit back and accept that he’s going to fade away and die, not when there’s something that could help him. It’s now or never for Simon.
With the Cure Sanfilippo Foundation, the Croke family works hard to share Simon’s story everywhere. Although they’ve already raised over $255,000, they still have a long way to go – and they’re hoping that getting the attention of organizations like the NBA and ESPN will get them there.
Maybe with the help of social media, Simon – and all the children who struggle with Sanfilippo Syndrome – will get the chance to live they deserve.
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The post office Parents Film 5-Year-Old’s Incredible Basketball Skills in Desperate Attempt to Save His Life: ‘Would you like to watch this with us?’ appeared first on Aware.
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