Our perfect baby was diagnosed with childhood Alzheimer's after we saw one thing

A mother's world was turned upside down when her "perfect" baby girl was diagnosed with a rare condition often referred to as childhood Alzheimer's, following the discovery of a strikingly similar child on TikTok.

Morgan Rachal, 29, and her husband Kirk, 34, were filled with joy at the arrival of their second daughter Lydia in October 2022. The couple, who are also parents to five year old Heidi, initially had no concerns about Lydia's health.

Despite Lydia experiencing frequent ear infections, constipation, and sleep disturbances, Morgan wasn't unduly worried, considering these to be "all common things that babies have".

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But the situation took a dramatic turn when Morgan's mother, Cindy Weaver, 55, stumbled upon a TikTok video featuring a little girl who bore an uncanny resemblance to Lydia and exhibited the same symptoms. The child in the video had been diagnosed with Sanfilippo syndrome, a rare disorder, reports the Express.

Children affected by Sanfilippo syndrome typically present with distinct facial features such as full lips, thick eyebrows that meet over the nose, or hirsutism, which is abnormal hair growth. After presenting the video to her physician, tests confirmed that Lydia also suffered from Sanfilippo syndrome B.

Sanfilippo syndrome, a rare genetic metabolic disorder also known as childhood Alzheimer's, leads to children regressing and losing all the skills they've previously learned. At 20 months old, Lydia has not yet shown signs of cognitive decline, but without intervention, her condition is expected to deteriorate.

Morgan, a nurse from Natchitoches, Louisiana, lovingly remembers the moment of Lydia's birth when the doctor declared: "The doctor said the words 'she's perfect' when she was born. She was hitting all her milestones."

As Lydia grew, she seemed to develop normally, hitting all the expected milestones in her early years. Discussing the impact of the diagnosis, Morgan shared: "When I found out I was in a really dark place."

It was then revealed that Lydia's condition is due to type B, caused by a problem in the NAGLU gene. Morgan is now fighting against time to get Lydia into a clinical trial in hopes of finding a treatment that could alter the course of the disease.

She starkly described what Lydia faces without treatment: "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."

The thought of her daughter losing her joy is what drives Morgan as she urgently seeks help: "Her joy right now will be taken away if she doesn't get into treatment."

Morgan believes Lydia's early diagnosis was a stroke of luck, made possible by the TikTok video, which could potentially save her from the progressive brain damage that characterizes Sanfilippo syndrome. With heartfelt gratitude, she acknowledged: "I'm grateful we were able to get the diagnosis early. I wouldn't have known until the brain damage started happening."

Morgan, determined to help other families avoid similar heartache, is now raising awareness about the difficult-to-spot symptoms. The loving mum describes little Lydia, saying: "She is a little ray of sunshine. She blows kisses. She is a little bundle of joy. She's a normal baby."