Family fights for 3-year-old with ‘childhood Alzheimer’s’

Key Points:

• Theo Laffer, a 3-year-old from Glenville, was diagnosed with Niemann-Pick disease type C, a rare and incurable genetic disorder causing neurological decline and organ enlargement, after years of unexplained symptoms and multiple genetic tests.
• The disease, caused by mutations in NPC1 or NPC2 genes, affects about 1 in 100,000 live births and leads to progressive neurological issues such as balance problems and memory loss; Theo is already showing early signs of these symptoms.
• Theo’s family is navigating insurance approvals for treatment, Medicaid, and disability benefits while preparing their home for medical needs; a local car dealership is hosting a fundraiser to support their medical expenses.
• The Laffers connected with another family affected by the disease, highlighting the variability in prognosis and the challenges of managing Niemann-Pick type C, but remain hopeful and urge other parents to persist in seeking diagnoses and care.
• Despite his condition, Theo enjoys typical childhood activities and upcoming special events, demonstrating resilience and the importance of family support in managing rare diseases.