Parents film 5-year-old’s unbelievable basketball skills in desperate attempt to save his life: ‘Will you watch this with us?’
Before little Simon Croke could even speak, he could shoot hoops like a professional basketball player.
Ball after ball, Simon would sink each shot — much to the delight of his parents, Alina and Jeremy. Amazed, the proud parents grabbed their phones and began to film their son’s incredible skills.
But around the age of 18 months old, Alina and Jeremy began noticing developmental delays in Simon, and started looking for answers. “Little did we know the devastation that lay ahead,” the family’s GoFundMe page reads.
After a series of tests, Simon was diagnosed with Sanfilippo syndrome, a fatal degenerative brain disorder in children that causes Alzheimer’s-like symptoms.
“Today, Simon is still a happy and active little boy who loves sinking baskets. But that will all go away without a treatment or a cure,” their GofundMe page states. “As the degeneration rapidly progresses, Simon will stop being able to shoot baskets, stop walking, stop talking, stop being able to feed himself. He’ll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then he’ll die. All in the coming years.”
Now, Alina and Jeremy are sharing their son’s incredible talents in the hopes of drumming up interest in his story — and perhaps finding a cure for his fatal disease.
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We spoke with 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 create 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 manifest until children are 2-6 years old. Those symptoms include “speech delays, multiple eye, ear and respiratory infections, behavioral issues, compulsive behavior and eventually 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 some promising clinical trials now.”
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And it is because of these promising clinic trials that Alina and Jeremy are desperately sharing Simon’s story online.
“Last spring, a film crew came to our home to help share our fight with Sanfilippo syndrome. We hoped that Simon’s amazing basketball skills might catch people’s attention, and his smile would melt their hearts,” the parents explain on their GoFundMe page.
Now, with the help of their son’s incredible basketball skills, and their emotional TikTok videos, the parents are hoping to raise the money that could save their child’s life.
“Our goal is to raise $1 million dollars to help fund these research projects and give Simon a chance at growing up, a chance at life,” their GoFundMe page reads. “We can’t just sit back and accept that he’s going to fade away and die, not when there is something that could help him. It’s now or never for Simon.”
Together with the Cure Sanfilippo Foundation, the Croke family is working hard to share Simon’s story far and wide. While they’ve already raised over $255,000, they still have quite a way to go — and they’re hoping that catching the attention of organizations like the NBA and ESPN will get them to their goal.
Perhaps with the help of social media, Simon — and all children fighting Sanfilippo syndrome — will get the chance at life that they deserve.
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