Louisiana mom learns of daughter's rare disorder through Tik-Tok

NATCHITOCHES, La. (KTAL/KMSS)—Morgan Rachal is the mother of 2-year-old Lydia, a seemingly normal little girl who was recently diagnosed with Sanfillippo Syndrome, a rare genetic condition that affects a child’s nervous system.

The diagnosis came after Rachal received a Tik-Tok from her mom. While swiping through TikTok, Morgan's mother saw a little girl in another part of the country who looked strikingly similar to her granddaughter Lydia, and alarms went off.

She sent the video to Morgan, who agreed the two girls had many similar characteristics and decided to do her own research. To her disbelief, Sanfillipo Syndrome, had symptoms that her daughter had been experiencing, which she thought were just normal baby woes. For example, reoccurring ear infections, constipation, and trouble sleeping.

"When I took it to the doctor, I showed him the TikTok. I showed him the side-by-side pictures and he basically told me he had never seen anyone with it, and he was shocked I was asking him that," explains Lydia.

She said blood and urine tests were ordered, and a week later, while sitting in her mother's living room, she opened the results and saw the word positive, and her world came crashing down.

"It was a gut punch in the stomach, I was in denial. I was like how my child has a terminal illness when I thought she was healthy this entire time," says Morgan.

According to the Cleveland Clinic, Sanfilippo syndrome occurs when one of four enzymes that affect the breakdown of heparan sulfate is deficient. Heparan sulfate is a glycosaminoglycan, a complex carbohydrate. Without the proper enzyme to break down heparin sulfate, it builds up in a child's cells, tissues, and organs, damaging them.

After being in what Morgan describes as a dark place, she decided to get up and fight for her daughter. She followed her mother's advice and set out to be Lydia's voice. She also began raising funds to find her 2-year-old baby a cure.

"She has a year or two until the brain damage begins...so I have that time frame to get her into a clinical trial with treatments that are working," explains Morgan.

The money donated will help Lydia and her family access treatment trials that could save her life.

If you'd like to donate and help Lydia and her family find a cure, visit Save Lydia.

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