A mother is raising awareness after learning through TikTok that her young daughter has a terminal illness. Morgan Rachal thought her baby daughter Lydia, was "healthy" and "normal" from birth. Neither she nor her husband had any concerns about their daughter's well-being — until Morgan's mother sent her a TikTok video of a little girl whose facial features resembled Lydia's.
Upon doing research, the symptoms her daughter had been experiencing but they didn't think much of — reoccurring ear infections, the inability to sleep at night, and gastrointestinal issues — all made sense.
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"Lydia was the perfect baby; she reached all her milestones and her symptoms are common things that babies have in general," Morgan told Newsweek. But upon doing her research, the mom's world turned upside down. "It just hit me."
While doing research, Morgan and her mom encountered two other children on social media, Hayden and Olivia. They believed the children, who had been diagnosed with Sanfilippo syndrome, looked identical to Lydia. The condition, also known as mucopolysaccharidosis type III, is a rare genetic condition that causes fatal brain damage, according to National Organization for Rare Disorders. It is categorized as a type of childhood dementia.
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A person with MPS III usually doesn't display any of the condition's features at birth — signs and symptoms of the disorder begin to show during early childhood. "There are four subtypes of Sanfilippo syndrome (MPS III A through D), but MPS IIIA is the most common type with an incidence of about 1 per 100,000 births," Dr. Alexis Monique Javier of Children's Memorial Hermann Pediatrics in Houston told Newsweek.
Morgan said her daughter's pediatrician was unable to give an official diagnosis because he'd never heard of the condition before. He instead had her order a testing kit. A week later, Lydia's urine sample came back positive. She had Sanfilippo syndrome.
"It's a waiting game now because there are no treatments available or cure for it yet; it's only clinical trials," the mother explained. Morgan now uses her TikTok platform to raise awareness and funds for her daughter. "If Lydia could get into a clinical trial before the brain damage begins, it either could cure it or prolong the progression of the disease," she explained.
The cost of the clinical trials, though, is a lot. The target to be raised for Lydia is $1 million. "Share, repost, donate if you can and most of all, prayers," the mother asks of their supporters. "The donations go to the foundation who do the research and fund for clinical trials. She needs a clinical trial — it's her only shot at life."
"Lydia is our little sunshine; she just brings so much happiness to us and you look at her and see all the potential that she could have in life," Morgan said. "We know there are treatments out there, we just have to get them."
Dr. Javier believes seeing the video was needed for the Rachal family. "From the video, it seems like they gained invaluable knowledge, awareness, and some answers." However, he urges parents to always seek professional counsel about any health concerns. "When it comes to seeking a diagnosis on TikTok, I believe there is benefit to spreading evidence-based information and awareness especially of very rare conditions and diseases."
*Disclaimer: The advice on LittleThings.com is not a substitute for consultation with a medical professional or treatment for a specific condition. You should not use this information to diagnose or treat a health problem without consulting a qualified professional. Please contact your health-care provider with questions and concerns.
