NEW ORLEANS — A young Louisiana woman was enjoying working as a registered nurse and raising her daughters with her husband. And then a glimpse at a TikTok video changed the direction of her life forever.
Now this mother has a touching story of her search for a medical cure.
Two years ago, on Valentine's Day, Kirk and Morgan Rachal, of Natchitoches, found out they were going to have another little girl. As baby Lydia grew up with big sister Heidi, they noticed she had thick eyebrows like her dad's family.
And she also had frequent ear infections, and some digestive issues, all thought to be common childhood conditions. Then this past March, Morgan's mom sent her a TikTok video of a similar-looking girl in Wisconsin.
“So, I came across the TikTok and saw Olivia, which looked just like Lydia's twin. It just hit me,” said Morgan Rachal. Olivia has Sanfilippo Syndrome. Morgan showed it to Lydia's pediatrician.
“He sat down and said he's never been asked this before, that it was very, very rare. He's never seen anyone with it. He didn't even know how to test for it.”
Tests were ordered. Two weeks later, Morgan got the results.
“I opened it up and just saw abnormal results, and I looked at it, and it was positive, and that was the worst feeling of my whole life,” Rachal said crying, as she remembered that most difficult day.
Sanfilippo Syndrome is an inherited metabolism disorder. A mutation in one gene prevents the breakdown of some sugars leading to serious brain, and nervous system problems.
There's no treatment or cure, and it's terminal. After a couple of weeks in total despair, Morgan found several connections to Lydia's name, and life in the Bible, and now believes she was born to create worldwide awareness to find a cure for all children.
“So, and it just like lit a fire in me that I have to fight for her, and do something,” she said.
Morgan made TikTok videos and started getting international magazines to do stories on the condition. She's pushing for more scientific research and clinical trials.
“Last night I was up 'til midnight writing a letter, because I'm about to send it to all the millionaires that, you know, I looked up, you know for funding.”
Morgan is now in touch with Olivia's family, and The Cure Sanfilippo Foundation for support. She is hoping if a clinical trial opens in Japan, Lydia will qualify.
“A lot of doctors aren't able to even know to test for it. So, a lot of moms, and their children get diagnosed with autism. I want the awareness. I want people to see her face. I want them to know her story, and I'm hoping it will reach the right person one day.”
And she won't give up until it does.
The city of Natchitoches has already helped Morgan raise $20,000.
If you want to donate:
Visit Cure Sanfilippo Foundation for more information.
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