When Morgan Rachal welcomed her daughter Lydia in October 2022, doctors described the newborn as "perfect". Beyond typical infant issues like constipation and ear infections, the 33-year-old mother from Louisiana had no concerns about her child's health.
The TikTok Revelation That Changed Everything
For the first eighteen months, Lydia's life appeared completely normal, filled with happiness and typical childhood milestones. That all changed when Morgan's mother sent her a TikTok video featuring a child who looked remarkably similar to Lydia, sharing the same distinctive thick eyebrows and full lips.
"It could have been her twin," Morgan recalled. The video told the story of a little girl diagnosed with Sanfilippo syndrome, a rare genetic disorder often called 'childhood Alzheimer's' due to its devastating effects.
The condition causes developmental regression and loss of skills, mirroring aspects of Alzheimer's disease in older adults. Characteristic features include heavy eyebrows, full lips, and excessive hair growth.
From Suspicion to Devastating Confirmation
Horrified by the similarities, Morgan immediately took Lydia to their doctor, showing him the TikTok video. Although the physician admitted he'd never encountered a case of Sanfilippo syndrome before, he agreed to refer Lydia for testing to eliminate the possibility.
A week later, the family received the crushing news: their worst fears were confirmed. Lydia had Sanfilippo syndrome.
"I felt like the life got sucked out of me," Morgan shared. "I felt like I couldn't breathe - my life was at a standstill. I had that instant feeling of 'my baby is going to die.'"
The reality of the diagnosis means Lydia likely won't develop the ability to walk or talk properly and isn't expected to survive beyond her third decade.
Race Against Time for Treatment
Currently, there is no cure for Sanfilippo syndrome, but Morgan and her husband Kirk are determined to make the most of their time with their daughter while pursuing experimental treatments.
Lydia enjoys playing with chickens, riding her little tractor, and listening to music. She shares a special bond with her six-year-old sister Heidi, though her parents worry about how the progressing disease will affect their relationship.
"I watch them play together, and what life would be like, if only she could get some treatment before the brain damage begins," Morgan said.
The family is collaborating with the Cure Sanfilippo Foundation and thirteen other affected families to access clinical drug trials. The proposed treatment involves replacing the missing enzyme that causes the condition with artificial enzymes produced in laboratories.
However, this potential lifeline comes with a staggering price tag: $6 million (£4.56 million). The family has launched a GoFundMe campaign with the goal of raising the necessary funds by spring 2026.
So far, Morgan and the other families have raised $1.6 million (£1.2 million) toward their target. They remain hopeful that the treatment will receive approval in the United States and that Lydia can begin receiving it in 2027.
"I am so hopeful that Lydia and the other children will get this treatment," Morgan expressed. "This is our last chance to save our daughter - and I am so grateful for everyone who is helping."
Symptoms of Sanfilippo syndrome include:
- Delayed speech development
- Behavioural problems
- Sleep disturbances
- Developmental regression
- Seizures
- Enlarged head and tongue
- Communication and social difficulties
