TikTok video leads to girl’s rare ‘childhood dementia’ diagnosis — as family raises $6M for treatment

A family of a little girl with condition dubbed ‘childhood dementia’ are raising $6 million to get treatment approved by the FDA — after she was diagnosed when they spotted a child with the same strong eyebrows on TikTok.

Morgan Rachal, 30, was over the moon when doctors told her that her daughter, Lydia, now three, was “the perfect baby.”

The mom-of-two had thought her daughter was completely healthy apart from the occasional common ear infection, constipation, and sleeping problems.

But when her mom, Cindy Weaver, 54, was scrolling through TikTok, she spotted a little girl who looked identical to Lydia, had the same symptoms, and had a rare disorder called Sanfilippo.

Morgan Rachal’s daughter Lydia was diagnosed with Sanfilippo syndrome. Morgan Rachal / SWNS

Children with Sanfilippo syndrome typically have full lips and heavy eyebrows that meet above the nose, or hirsutism, which is excess hair growth.

Morgan showed the video to her doctor, and following tests, Lydia was diagnosed with Sanfilippo syndrome B — often called childhood Alzheimer’s or dementia because of the neurodegenerative nature of the disease, which leads to a loss of skills.

Sadly, there are currently no treatment options available for Lydia, so Morgan is trying to raise $6 million with other families for enzyme replacement therapy – which has not yet had Food and Drug Administration approval.

Morgan, a nurse from Natchitoches, Louisiana, said: “This is our last chance to save Lydia.

“We are very hopeful that the treatment will be approved by the FDA.

Morgan is trying to raise $6 million with other families for enzyme replacement therapy, which has not yet had FDA approval. Morgan Rachal / SWNS

“We hope that once the drug is approved, it will be on the market for our children in 2027.

“Currently Lydia doesn’t have any brain damage, she doesn’t have any regression — she is your typical little toddler.

“My goal is to get her the treatment before the brain damage begins.”

Morgan and her husband Kirk, 34, a contractor, welcomed Lydia in October 2022.

The parents — who also have Heidi, six, together – had no worries about Lydia.

Morgan said: “I had the perfect pregnancy and birth.

“When she came out, the doctor said she was the perfect baby.

“It wasn’t until 18 months later, she had frequent ear infections. She was constipated. She never slept through the night.

“It was all common things that babies have.

“I wasn’t looking at anything wrong. I was never worried about anything.”

Lydia has a 6-year-old sister named Heidi. Morgan Rachal / SWNS

But her mom spotted a video of a little girl with Sanfilippo on TikTok who looked identical to Lydia with the same thick eyebrows — a trait of the disorder.

Morgan showed her pediatrician the video, and he agreed they did look alike and referred them for blood and urine tests.

Lydia was sent for tests, and a week later they came back positive.

Morgan said: “My mom showed me the TikTok. I immediately thought she looks like my child’s twin.

“A week later, we got the results through my phone.

“I pulled them up, I saw red, and it said positive for Sanfilippo Syndrome.

“I felt like the life got sucked out of me.

“I felt like I couldn’t breathe — that my life was at a standstill.

Lydia has type B Sanfilippo syndrome, which is caused by a defect in the NAGLU gene. Morgan Rachal / SWNS

“I had that instant feeling of ‘my baby is going to die.'”

They were then able to determine it was type B – caused by a defect in the NAGLU gene.

But sadly, doctors told Morgan and Kirk there was no cure and to go home and make memories with Lydia.

Morgan said: “They call it childhood dementia.

“She won’t be able to walk or talk. She won’t make it through the third decade of life.

“Her joy right now will be taken away if she doesn’t get into treatment.”

Not wanting to give up, Morgan and 14 other families have found a treatment option that is currently awaiting FDA approval.

The families are currently raising $6 million by spring 2026 so that their children can get enzyme replacement therapy — replacing the enzymes missing in Sanfilippo with ones produced in a lab.

According to the Cure Sanfilippo Foundation, enzyme replacement therapy is a promising treatment being developed to deliver the missing enzyme to the body’s cells, though it is still in clinical trials and not yet a cure.

Morgan and other Sanfilippo families have already raised $1.6m and are “hopeful” the drug will be approved and hopes their children will have access to it by 2027.

Morgan and other Sanfilippo families have so far raised $1.6 million. Morgan Rachal / SWNS

Morgan said: “A few weeks ago, we were told that there is a treatment option available for us.

“We need to raise $6 million that will fund treatment for 15 children.

“We need $3.8 million by December 1, 2025, and the rest by 2026.

“I am so hopeful that Lydia and the other children will get this treatment.

“This is our last chance to save our daughter – and I am so grateful for everyone who is helping.”

Donations can be made to Morgan’s GoFundMe.