‘My son has childhood Alzheimer's - I mourn the future he'll never have'

ok.co.uk:

Seventeen-year-old Logan Pacl suffers from Sanfilippo syndrome, often referred to as 'childhood Alzheimer's' or 'childhood-onset dementia' and his family have shared their deeply personal journey or raising a teenage son with a rare and terminal disorder.This genetic neurodegenerative disorder is caused by a single gene defect that specifically attacks the brain and spinal cord of children, gradually erasing any skills they once had.

It also causes pain, seizures, and movement disorders.There is no cure for the disease, and most children die by the time they reach their mid-teens. "Logan was born in 2007 alongside his twin brother Austin, and at first, everything seemed normal," Logan's mum Noelle recalled. "Both boys were healthy; Logan met all developmental milestones until he was about a year old when he started falling behind his twin.The biggest red flag was the speech delay - while Austin was talking, Logan had no words at all." As Logan's condition worsened, his symptoms expanded to include chronic respiratory infections, gastrointestinal issues, and a noticeably large, round belly.

It wasn't until January 2010 that Noelle and her husband, William, received their son's devastating diagnosis. "I'll never forget the day we got the phone call," shared Noelle. "The genetic counsellor was explaining everything, but all I could think was, 'Just tell me how we fix this.' Then she said it: 'This disease is terminal, and there is no cure or treatment.' I don't remember anything she said after that.

My heart just dropped into my stomach." The diagnosis of Sanfilippo syndrome, specifically the MPS IIIA type, left Noelle and William, a Navy officer from Silverdale, Washington, reeling.