A mother uses social media to raise awareness among other families about her son’s disease, Sanfilippo syndrome, also known as “childhood Alzheimer’s.”
When Logan and his twin brother Austin were born in 2007, everything seemed fine, but as time passed, the parents noticed differences in the babies’ development.
Noelle and her husband noticed that Logan was falling behind compared to Austin, and soon after, he was diagnosed with Sanfilippo syndrome, which some know as “childhood Alzheimer’s.”
Sanfilippo syndrome is caused by a genetic mutation and primarily affects the central nervous system; the disorder prevents the metabolism from breaking down certain sugar molecules, which accumulate in cells, causing neurological damage.
Since 2020, Noelle has shared her life on Instagram to raise awareness about the disease among other families. In an interview with Bored Panda, she talked about Logan’s condition: “Sanfilippo syndrome is a rare, neurodegenerative, and terminal disease. Children lose all the skills they have gained, such as speaking, eating by mouth, walking, and more. They suffer from seizures, movement disorders, joint pain, and have a short life span. The average life expectancy is mid to late adolescence.”
Logan has cognitive abilities similar to a one-year-old, and since the age of 10, he has not spoken, but he communicates with the family using an alternative communication system.
“Logan lost all speech at 10 years old. He mainly communicates through body language and sometimes with something called the Picture Exchange Communication System (PECS),” Noelle explained.
Despite all the challenges, Noelle and her husband William do everything they can to ensure that Logan is always surrounded by love and can experience different life moments, just like any other boy.
For the mother, it’s important to raise awareness about Sanfilippo syndrome, and social media is essential for this work. For Noelle, it’s a way for more people to learn about the condition and a hope that one day a cure will be found.
“The main role we play is that of educators. I answer people’s questions about the disease. But I also share our lives living with Sanfilippo syndrome. I share the struggles and the happy moments. All of this is awareness. With such a rare disease, awareness is extremely important. The more people know about Sanfilippo syndrome, the closer we get to finding a cure.”
Photos: Instagram @love_logan07. This content was created with the help of AI and reviewed by the editorial team.
