In December 2021, NEWSWEEK Share the story of Simon Croke – a 5-year-old boy with Sanfilippo Syndrome, a fatal degenerative disease that shows symptoms similar to Alzheimer’s disease.
On Wednesday, Simon’s parents Alina and Jeremy shared a raw video clip on TikTok. In the video, Alina and Jeremy are filmed watching a promotional video to help raise money to fund valuable research pathways that could be a breakthrough for Simon and other children with Sanfilippo Syndrome.
With more than 2.4 million views and thousands of likes and comments, the unedited video has impacted online viewers.
The power of the viral video has helped raise more than $165,000 in donations to achieve the family’s $1 million goal.
Simon was diagnosed with Sanfilippo Syndrome in 2018 when he was just two and a half years old. The disease is a rare neurodegenerative condition that affects 1 in 70,000 children for which there is currently no cure.
Simone’s mother, Alina, said: NEWSWEEK: “Sanfilippo destroys every cell in Simon’s brain and body every second. We know this. He has lags, but also happily still learning new things. Although, without treatment in the future, it would be a devastating and destructive course for him.”
Children with the disease usually begin to lose their mental function – especially speech – before their motor function has deteriorated. Devastatingly, those afflicted with this condition will die as children. Babies usually stabilize in their development as toddlers before quickly losing their ability to walk, talk and eat.
“If Sanfilippo continues to progress, Simon will lose the ability to talk, walk, eat and swallow,” Alina said. “He would become wheelchair-bound and likely die in his teenage years.”
There are four subtypes of Sanfilippo syndrome, ranging from the most common to the rarest: A, B, C, and D. Simon has type B. Researchers around the world are working hard to develop effective treatments—while exploring different approaches, gene therapy is believed to be the most promising. But a combination of treatments is suggested to give the best results, which means that research across the board is essential.
The family works closely with the Cure Sanfilippo Foundation which is supporting funding for two new research pathways that could benefit Simon and other children with Sanfilippo.
Simon, who loves to hit basketball hoops, has captured hearts around the world thanks to the viral video. TikTok users expressed their love and support for the family.
One commenter said: “My heart goes out to this family. You can see how much their love for him overcomes their fear of the future.” Another comment shared hope for the impact of the video: “No one should go through this. TikTok, work your magic please,” while one TikToker wrote simply: “Bawling.”
Other viewers commented on Simon’s love of basketball and suggested it would be great to get the players involved: “It would be great if some basketball stars or teams/colleges could help you out. Prayers for all of you.” Since then, commentators have flagged the NBA and several basketball teams across the country to try to draw attention to Simon’s story.
Since the video went viral online, retired NBA star Chantelle Tremetier and TikTok Challenge creator Alex Presley have offered to help share Simon’s story.
Alina said, “In an illness like Sanfilippo, it can be very easy to lose hope and give up. But we will not do that and we will continue to fight for Simon. Every parent wants only the best for their children, and we know by doing fundraising and advocating that we can help Simon and many other children like him “.
The TikTok community continues to rally around Simon and his family, sharing heartwarming video and supporting the family in every way possible. While Simon’s future is unpredictable, the family hopes that the money raised to fund important research will give them more time with their son.
“We hope Simon has many good days,” said Alina. “We try not to think too much down the road. Hopefully the terrible things that happen in Sanfilippo’s disease don’t happen to Simon, of sorts. Therapeutic intervention in the future. That’s why we’re doing this campaign.” To fund this research and fund this hope.”
You can learn more about Simon’s story and donate at helpimon.com.