In December 2021, Newsweek shared the story of Simon Croke – a 5-year-old boy diagnosed with Sanfilippo Syndrome, a fatal degenerative disease that presents symptoms similar to Alzheimer's.
On Wednesday, Simon's parents Alina and Jeremy shared a raw video 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 over 2.4 million views and thousands of likes and comments, the unedited video has touched viewers online.
The power of the viral video has helped raise more than $165,000 of donations toward the family's $1 million goal.
Simon was diagnosed with Sanfilippo Syndrome in 2018 when he was just 2 and a half years old. The illness is a rare neurodegenerative condition that affects 1 in 70,000 children and currently has no cure.
Simon's mom Alina told Newsweek: "Sanfilippo is damaging every cell in Simon's brain and body every second. We know this. He does have delays, but also thankfully is still learning new things. Without future treatment though, it will be a devastating and destructive path for him."
Children with the illness usually start to lose their intellectual functions – especially speech – before their motor function declines. Devastatingly, those with the condition will die as children. Children typically plateau in their development as toddlers before rapidly losing their ability to walk, talk and eat.
"If Sanfilippo continues to progress, Simon will lose the ability to talk, walk, eat and swallow," said Alina. "He'll become wheelchair bound and likely pass away in his teen years."
There are four subtypes of Sanfilippo Syndrome, ranging from most common to most rare: A, B, C, and D. Simon has type B. Researchers around the world are working hard to develop effective treatments – with various avenues being explored, gene therapy is thought to be the most promising. But a combination of treatments is suggested to give the best outcome, meaning that research in all areas is essential.
The family work closely with the Cure Sanfilippo Foundation which is supporting the funding of two new research pathways that could benefit Simon and other children with Sanfilippo.
Simon, who loves shooting basketball hoops, has captured hearts around the world thanks to the viral video. TikTok users voiced their love and support for the family.
One comment said: "My heart breaks for this family. You can see how much their love for him beats even their fear for 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 simply wrote: "Bawling."
Other viewers commented on Simon's love of basketball and suggested it would be amazing to get players involved: "It would be cool if some of these basketball stars or teams/colleges would help y'all out. Prayers for you all." Commenters have since tagged the NBA and multiple basketball teams around the country to try to draw attention to Simon's story.
Since the video went viral online, retired NBA star Chantel Tremitiere and TikTok challenge creator Alex Presley have both offered to help share Simon's story.
"In a disease like Sanfilippo, it can be very easy to lose hope and give up," said Alina: "But we won't do that and we'll keep fighting for Simon. Every parent wants only the best for their child, and we know in doing this fundraising and advocacy that we can help Simon and so many other kids like him."
The TikTok community continues to rally around Simon and his family, sharing the heartwarming video and supporting the family in every way it can. 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 can have many, many more good days," Alina said: "We try not to think too far down the road. We hope the terrible things that happen in the disease Sanfilippo won't happen to Simon, with some type of future treatment intervention. It's the reason we are doing this campaign. To fund that research and to fund that hope."
You can find out more about Simon's story and donate at helpsimon.com.
