Baby diagnosed with 'childhood Alzheimer's' after 'twin' found on TikTok

A mum has spoken of her heartbroken after finding out her "perfect" baby was diagnosed with childhood Alzheimer's. The stark discovery was made after she spotted an identical looking girl on TikTok.

Morgan Rachal, 29, was over the moon when she welcomed her second daughter, Lydia, now 20 months old, into the world. The mum-of-two had thought her daughter was completely healthy apart from the odd common ear infection, constipation and sleeping problems.

But when her mum, Cindy Weaver, 55, was scrolling through TikTok she spotted a little girl who looked identical to Lydia. The girl had the same symptoms and had a rare disorder called Sanfilippo.

Children with Sanfilippo syndrome typically have full lips. As well as 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. The disorder is a rare genetic metabolism disorder know as 'childhood Alzheimer's' as it causes children to lose skills they have gained.

Lydia currently isn't showing any signs of cognitive decline, but she is likely to if she doesn't receive treatment. Morgan hopes to get her on a trial as Sanfilippo currently has no cure.

Morgan, a nurse, from Natchitoches, Louisiana, US, said: "The doctor said the words 'she's perfect' when she was born. She was hitting all her milestones. My mum came across a TikTok in March called the saving Liv TikTok. They looked like twins.

"My mum said she looks just like Lydia. I started looking more into the syndrome. It was the worst day ever [when Lydia was diagnosed]. It's very heart breaking."

Morgan and her husband Kirk, 34, a contractor, welcomed Lydia in October 2022. The parents - who also have Heidi, five, together - had no worries about Lydia.

Morgan said: "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."

But after her mum 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 tests.

Lydia was sent for blood tests and urine tests and a week later they came back positive. Morgan said: "When I found out I was in a really dark place." They were then able to determine it was type B - caused by a defect in the NAGLU gene.

Morgan said: "They don't start to regress until aged three or four. She knows about 20 words. She's the happiest baby." Morgan is desperate to get Lydia onto a clinical trial as soon as she can in the hopes they can find a treatment.

She 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."

Morgan is grateful her mum spotted the TikTok - without it they may not have got a diagnosis until much later on when Lydia had already started to regress. The mum-of-two hopes to raise awareness of the symptoms so other children can be diagnosed early and to help research and trials into a cure.

She said: "She is a little ray of sunshine. She blows kisses. She is a little bundle of joy. She's a normal baby."

Donate to help Morgan raise money to help fund a clinical trial here.