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Parents discover rare, fatal disease in their daughter after watching a TikTok video

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Four-year-old Veda UIrich from Palm Coast suffers from an incurable and degenerative disease.

Her parents Christin and Jericho Ulrich found out in a completely unexpected way.

“Veda was about 14 months old and didn’t speak as well as children her age. She kept getting respiratory and ear infections,” said Christin Ulrich.

Veda's parents felt something was wrong.

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“We took her to her first doctor and he kind of allayed our concerns, so I hired a second pediatrician who started testing and ruling out the more common problems a child might have,” Christin Ulrich said.

They made an appointment for a genetic test for Veda, but it was scheduled for a year later.

“This is annoying; we know how rare Sanfillipo syndrome is, but I think that many rare syndromes have very distinctive features in their children – particularly Sanfillipo syndrome – and we just wish there was a way for pediatricians to do more “To gain information and more awareness,” says Christin Ulrich said. “This way children don't go undiagnosed for so long. It's very frustrating when you know something is wrong and the doctors can't help you.”

One evening, Christin was scrolling on TikTok when she saw this video.

It came from an account called “Carrie + Haidyn.” The account is run by the mother of a little girl who also suffers from Sanfillipo syndrome.

“I came across Haidyn's video and Carrie was talking about Sanfillipo syndrome and my first reaction was, 'Wow, she looks like Veda, they could be twins,'” said Christin Ulrich. “As soon as I saw her and then saw the symptoms of Sanfillipo syndrome, it felt like someone had punched me in the stomach.”

In 2022, Veda was diagnosed with Sanfillipo syndrome.

“We have learned that she will likely lose her ability to speak to us within the next year or so. She will lose her ability to walk, eat with her mouth, she will need a feeding tube, she will suffer from muscle spasms,” Christin Ulrich said. “…And then when she's a teenager, we'll lose her.”

Jericho Ulrich said they had dreams for Veda. They hoped she would go to school, get a job and have children of her own.

“With this diagnosis, we realized that something like this will not happen,” said Jericho Ulrich.

Veda's parents are raising money for a clinical trial in hopes that doctors can treat several children with Sanfillipo syndrome, including Veda.

“There aren’t enough people who are aware of it and care about it – the donations aren’t coming in,” said Christin Ulrich.

The Ulrichs said the more people know about the syndrome, the better. That's why they put several signs in their front yard with a QR code that directs you there GoFundMe.

Your goal is $500,000.

Although Veda can't really understand much at the moment, her parents want her to know something.

“God, how much we love her and how much we will do everything we can to save her, and if we can’t save her, we will still do things in her honor; And before we die, we will ensure that Sanfillipo syndrome can be cured. “We won’t stop,” said Christin Ulrich.

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