A New Video Adds to the ‘Help Simon’ Fundraising Story
The mother of a boy with Sanfilippo speaks about her health and campaign
In March, after Alina and Jeremy Croke shared a TikTok video that communicated their $1 million goal to help find a treatment for their young son, Simon, and others who have Sanfilippo syndrome, they were taken aback by the support. The video went viral.
What truly surprised the couple, though, was concern about Alina’s appearance. Many viewers inquired about her health, according to a Cure Sanfilippo Foundation press release.
At the time, she wasn’t ready to reveal that she’d been diagnosed with triple negative breast cancer — an aggressive form of malignancy — before Simon was born.
Alina is now sharing her health journey in a new TikTok video that she hopes will bring more awareness to her campaign to speed critical Sanfilippo research to clinical trials. She also hopes that more people will connect to her and Jeremy’s fight for Simon, who was 5 at the time of the March video, and others with the rare disorder.
“We started with chemotherapy first to shrink my mass and increase my chances of survival,” she said in the emotional three-minutes-plus video that so far has garnered 1,889 “likes.” “Thankfully, I’m here now. But the chemotherapy did do its damage, so I was left infertile. I didn’t even make the chart of fertility. Having kids didn’t seem like that was going to be a possibility. It was heartbreaking to think this is not likely going to be a possibility.”
When she learned she was pregnant, she and Jeremy were overjoyed. “We didn’t know if I’d be able to — if it would survive and I’d be able to carry it to term, but even just the fact of getting pregnant seemed like such as absolute miracle. At 39 weeks, Simon surprised us.”
Yet something seemed amiss with their “happy, smiley” miracle child. She noticed that Simon wasn’t hitting developmental milestones. He wasn’t rolling over, nor was he reaching for toys.
“I took him to see the geneticist, and looking at the paperwork,” she saw Sanfilippo syndrome and thought, “What is this? … I Googled it … I just cried all night long.”
Treatments sought
The Crokes are hoping to see potential treatments advance before their son, who was diagnosed three years ago, loses his ability to talk and walk.
The focus is on two experimental treatments. One is CLR01, which lowered neuroinflammation levels and decreased memory deficits in Sanfilippo syndrome mice.
The other is using transplanted human neural stem cells to express and secrete an enzyme — sulfoglucosamine sulfohydrolase — that is lacking in Sanfilippo. A proof of study in an animal model was completed in April 2021.
“Scientists have discovered a new line of treatment that has significant potential for Simon and other kids with Sanfilippo syndrome,” Alina said in the new video. “This could be absolutely groundbreaking and lifesaving for Simon and for kids with Sanfilippo syndrome. We need to raise funds. He doesn’t have time to wait. Other kids with this condition don’t have time to wait. This research needs to happen now, before it’s too late.”
The Help Simon campaign, which opened in November, is supported by the Cure Sanfilippo Foundation. So far, it has raised $365,176.
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