A mother’s world was turned upside down when she discovered her baby’s rare condition after seeing a TikTok video. Morgan Rachal, 29, noticed a resemblance between her daughter, Lydia, and a child with Sanfilippo syndrome on the social media platform. Despite Lydia appearing healthy, Morgan couldn’t shake off the similarities and decided to consult a doctor. Following tests, Lydia was diagnosed with Sanfilippo syndrome type B, also known as childhood Alzheimer’s.

Morgan, a nurse from Natchitoches, Louisiana, expressed her shock at the diagnosis, recalling how Lydia had been hitting all her milestones and seemed like a perfect baby. The symptoms of Sanfilippo, which include slowed development, behavioural issues, and cognitive decline, usually appear between the ages of two and six. While Lydia currently shows no signs of cognitive decline, early intervention is crucial to prevent its onset.

Despite the devastating news, Morgan and her husband Kirk, who had no health concerns about Lydia when she was born, are determined to explore treatment options. Lydia’s parents hope to enroll her in experimental trials, although there is currently no cure for Sanfilippo syndrome.

The family’s story serves as a reminder of the power of social media in raising awareness about rare conditions and the importance of early detection. As they navigate this challenging journey, Morgan, Kirk, and their two daughters remain hopeful for a brighter future for Lydia.