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A Washington family has shared their deeply personal journey of raising a teenage son with a rare and terminal disorder. Seventeen-year-old Logan Pacl of Silverdale suffers from Sanfilippo syndrome, often referred to as "childhood Alzheimer's" or "childhood-onset dementia." 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, reeling. "We hadn't lost Logan yet, but we'd lost the future we had envisioned for him," added Noelle. "Riding a bicycle, going to school, getting married, watching him grow up and start his own family - all that was gone. We decided we needed to make the most of every moment we had with him. We also knew we had to fight for him, to find something that could help." Determined to improve their son's quality of life, the Pacls opted for an experimental stem cell treatment at Duke University when Logan was three. The procedure was risky, involving chemotherapy to destroy Logan's immune system before introducing new stem cells that could potentially produce the enzyme his body was lacking. "It was one of the hardest decisions we've ever had to make as parents," Noelle admitted. "We were putting Logan's life at risk, but we felt we had to try something, anything, to give him a better quality of life." While the treatment, which was akin to a bone marrow transplant, helped with some of Logan's physical symptoms, the disorder continued to take its toll as he grew older. He started losing his speech at four years old and regressed in almost all developmental milestones from then onwards. Noelle continued: "Life with Logan is anything but typical. Each day is a battle to maintain the skills he still has. We work with him daily on walking up and down stairs, fine motor skills, engagement, communication, and attention span. If he doesn't practice these skills, he will lose them." Logan uses images to communicate his needs through a Picture Exchange Communication System (PECS) binder. His cognitive level is comparable to that of a baby aged nine months to one year old, and he needs constant supervision and help. "Despite his challenges, Logan is an active and happy teenager. He loves the outdoors, hiking, swimming, and, most of all, jumping on trampolines, so much so that we can't go anywhere without a trampoline," Noelle laughed. Logan's condition also requires a unique sleeping arrangement. He sleeps in a sleep-safe bed that is fully enclosed and padded to protect him from the seizures he regularly experiences. "Logan has both focal seizures, where he is aware of what's happening, and tonic-clonic seizures, where he loses consciousness. The bed keeps him safe during the night, but it's still heartbreaking to see him go through this. He also suffers from dystonia, a painful movement disorder that causes his muscles to contract involuntarily. It's awful to watch and even worse knowing there's nothing we can do to stop it." Since 2020, Noelle has advocated for Sanfilippo syndrome awareness, sharing her family's journey on TikTok. Her videos have gone global, helping to create awareness of the disorder and encouraging other parents to seek early diagnosis for their children. While Logan's future is uncertain, the Pacl family is determined to make the best of it while he is around. "William and I used to do everything possible, not to think about what lay ahead of us, but it was just our way of denying reality. Now we focus on cherishing every second we spend with Logan and ensuring that he enjoys most of them," concluded Noelle. Featuring: Logan Pacl When: 02 Sep 2024 Credit: @love_logan07/Cover Images **EDITORIAL USE ONLY. MATERIALS ONLY TO BE USED IN CONJUNCTION WITH EDITORIAL STORY. THE USE OF THESE MATERIALS FOR ADVERTISING, MARKETING OR ANY OTHER COMMERCIAL PURPOSE IS STRICTLY PROHIBITED. MATERIAL COPYRIGHT REMAINS WITH STATED PHOTOGRAPHER AND/OR SUPPLIER.**