Dementia: Warning issued as girls thick eyebrows – Health – News…
Girl’s thick eyebrows had been signal of uncommon ‘childhood dementia’ (Image: PIX SWNS)
A household of a little lady with condition dubbed ‘childhood dementia’ are raising $6m to get treatment accepted by the FDA – after she was recognized when they noticed a youngster with the same strong eyebrows on TikTok.
Morgan Rachal, 30, was over the moon when docs told her that her daughter, Lydia, now three, was “the perfect baby.”
The mom-of-two had thought her daughter was utterly healthy aside from the occasional common ear infection, constipation, and sleeping issues.
But when her mother, Cindy Weaver, 54, was scrolling through TikTok, she noticed a little lady who seemed equivalent to Lydia, had the same symptoms, and had a uncommon disorder called Sanfilippo.
Children with Sanfilippo syndrome sometimes have full lips and heavy eyebrows that meet above the nostril, or hirsutism, which is extra hair growth.
Morgan Rachal the day of Lydia’s beginning (Image: PIX SWNS)
Morgan confirmed the video to her doctor, and following assessments, Lydia was recognized 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 abilities.
Sadly, there are presently no treatment choices accessible for Lydia, so Morgan is attempting to raise $6 million with other households for enzyme alternative therapy – which has not yet had Food and Drug Administration approval.
Baby Lydia and her sister (Image: SWNS)
Morgan, a nurse from Natchitoches, Louisiana, said: “This is our last chance to save Lydia.
“We are very hopeful that the treatment can be accepted by the FDA. We hope that once the drug is accepted, it will likely be on the market for our youngsters in 2027. Currently Lydia does not have any mind harm, she does not have any regression — she is your typical little toddler. My purpose is to get her the treatment before the mind harm begins.”
Morgan and her husband Kirk, 34, a contractor, welcomed Lydia in October 2022.
Kirk and his baby Lydia the day she was born (Image: SWNS)
The parents – who also have Heidi, six, together – had no worries about Lydia.
Morgan said: “I had the proper being pregnant and beginning. When she got here out, the doctor said she was the proper child. It wasn’t until 18 months later, she had frequent ear infections. She was constipated. She never slept through the night time. It was all common issues that infants have. I wasn’t wanting at something fallacious. I used to be never nervous about something.”
Baby Lydia and her father Kirk in the stands at an event (Image: 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 paediatrician 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 mother confirmed me the TikTok. I immediately thought she seems like my kid’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.
Baby Lydia and her sister Heidi playing softball (Image: SWNS)
“I had that instantaneous feeling of ‘my child goes to die.'”
They were then able to determine it was type B – caused by a defect in the NAGLU gene.
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 will not have the option to stroll or discuss. She will not make it through the third decade of life. Her pleasure proper now can be taken away if she does not get into treatment.”
Baby Lydia is diagnosed with Sanfilippo (Image: SWNS)
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 treatment 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.
Baby Lydia and her sister Heidi (Image: SWNS)
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 said: “A few weeks in the past, we had been told that there may be a treatment option accessible for us. We need to raise $6 million that will fund treatment for 15 kids. We need $3.8 million by December 1, 2025, and the remainder by 2026. I’m so hopeful that Lydia and the other kids will get this treatment.
“This is our last chance to save our daughter – and I am so grateful for everyone who is helping.”
If you want to donate to Morgan’s GoFundMe, go to: Donate to Save Lydia, organized by Morgan Rachal
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