Parents of children diagnosed with Sanfilippo syndrome, also known as Childhood Alzheimer's, have turned to social media platforms like TikTok to raise awareness about the devastating effects of the rare genetic disorder. The condition causes severe cognitive decline and robs children of their memory and skills by the time they reach their teenage years. With no known cure, these children have a life expectancy of mid-teens.

Sanfilippo syndrome, also referred to as mucopolysaccharidosis type III or MPS III, is a neurodegenerative disease that affects cells in the central nervous system, causing them to lose function and eventually die. This condition occurs when both parents carry a defective gene that hinders the breakdown of heparan sulfate, a cellular waste product. As a result, toxic levels of this waste build up in the brain and other organs, leading to the progressive loss of cognitive and motor skills.

Although Sanfilippo syndrome affects fewer than 5,000 individuals in the United States, a community of parents has formed support groups on social media platforms to share their experiences and struggles. One viral TikTok video, posted by Erin Stoop, shows her four-year-old daughter Olivia, who has Sanfilippo syndrome, struggling to say "I love you." Mrs. Stoop breaks down in tears as she witnesses Olivia's fading ability to communicate.

In another video, Mrs. Stoop expresses her shock at how quickly Olivia's words have faded, estimating that her daughter will be completely non-verbal by the time she reaches first grade. These heart-wrenching experiences highlight the urgent need for a cure to save the lives of children like Olivia.

The symptoms of Sanfilippo syndrome often go unnoticed or misdiagnosed as other developmental disorders like autism. Early signs include speech and developmental delays, rapid breathing after birth, macrocephaly (enlarged head size), excessive body hair, hearing loss, and sleep disturbances. Children with Sanfilippo syndrome may also exhibit distinct facial features such as thick brows, coarse hair, full lips, and a prominent nose.

Families, like Carrie Fowler's from Georgia, have also taken to social media to share their stories. Carrie documents her nine-year-old daughter Haidyn's experience with Sanfilippo syndrome, sharing updates with their 1.2 million TikTok followers. Haidyn, who initially achieved all her normal milestones, began experiencing speech and developmental delays at age three. Despite initially being diagnosed with autism and other disorders, genetic testing later revealed Sanfilippo syndrome. Haidyn has now lost the ability to walk, talk, and eat without a feeding tube, and she suffers from seizures and sleep disturbances.

Noelle Pacl from Washington state also used TikTok to showcase the progression of her 16-year-old son Logan's Sanfilippo syndrome. The heartbreaking video shows Logan's decline, from waving his hands and attempting to sing along with a song as a young child to losing much of his hearing and struggling to vocalize.

Sanfilippo syndrome affects approximately one in 70,000 births in the US, and there is currently no cure for this terminal condition. The parents sharing their stories on social media hope to raise awareness and support research efforts to find a cure for Sanfilippo syndrome before it's too late for their children.