Log Pacl is not your typical teenager. At the age of 17, he faces a rare and devastating illness known as Sanfilippo syndrome. Often referred to as “childhood Alzheimer’s,” this cruel disorder steals children’s cognitive abilities, much like how Alzheimer’s affects the elderly. Imagine the heartache of witnessing your child’s memories disappear and their development unravels right in front of you.
Initially, everything appeared normal.
Logan Pacl’s life is a struggle against time. Diagnosed with Sanfilippo syndrome—known as “childhood Alzheimer’s”—the 17-year-old from Silverdale confronts an unforgiving genetic disorder that gradually takes away the joys of childhood. This neurodegenerative disease, caused by a single faulty gene, assaults the brain and spinal cord, leaving a harsh trail of lost skills, seizures, and constant discomfort. It acts like a ticking clock, as most children with this terminal condition rarely survive past their mid-teens.
For Logan’s family, the heartbreak began early on. Born in 2007 alongside his twin brother Austin, Logan appeared to be just another healthy infant. Both boys reached their developmental milestones—until Logan started to lag. A year later, red flags started to show: while Austin was speaking, Logan stayed silent. The gap between them widened, signifying a painful path ahead.
Sanfilippo syndrome does not only rob children of their future; it wipes out their past.
Then, the diagnosis arrived, a piece of news no one was prepared for.
As Logan’s health declined with frequent infections and a visibly swollen belly, his parents, Noelle and William, sought answers. In January 2010, they discovered that Logan had Sanfilippo syndrome, a terminal illness with no cure or treatment and a life expectancy that usually extends only into the late teenage years. “I’ll never forget when we received that phone call. The genetic counselor kept speaking, and all I could think was, just tell me how we can fix this. Then she delivered the blow: ‘This disease is terminal, and there is no cure or treatment,’” his parents recount.
Noelle remembered her immediate response to the diagnosis, struggling with the weight of the news that this disease was fatal. The magnitude of it all made her feel as if her heart had sunk. It was challenging to process anything beyond the stark reality of their situation.
Noelle spoke about mourning not just for the child she had but also for the future she had envisioned for him, a future that was abruptly taken away. The medical advice they received was scant and unhelpful, merely suggesting they take Logan home and cherish their moments together. This lack of specific guidance only intensified their feelings of despair.
In their quest for hope, Noelle and William stumbled upon experimental stem cell treatments through online searches. Motivated by a success story from another mother, they decided to seek the same treatment for Logan. Thus began a tough three-month process involving a bone marrow transplant. He underwent chemotherapy to eliminate his immune system, making it possible for the new stem cells to take hold. It was a high-risk procedure, but it seems to have alleviated some of Logan’s physical symptoms.
“Life with Logan is anything but ordinary.”
At 17, Logan’s life differs significantly from that of most teenagers. Losing his ability to speak at a young age presented challenges for him and his family, but over time, he has become more adaptable. “Life with Logan is anything but ordinary. Each day brings a struggle to preserve the skills he possesses,” his mother, Noelle, shared.
The Pacl family dedicates their days to helping Logan maintain his abilities. This involves practicing walking, fine motor skills, communication, and focus. Despite the hurdles, Noelle believes they find joy in their shared experiences. Since Logan’s cognitive level is similar to that of a 9 to 12-month-old, he communicates with his mother using a Pecs (Picture Exchange Communication System) binder. Noelle has also learned to interpret his body language to better understand his needs.
Logan has a passion for staying active. He loves hiking, swimming, and taking daily walks. He enjoys looking at books, even though he can’t read them, and watching movies. His favorite activity, however, is jumping on a trampoline, which Noelle considers essential for him.
His mother utilizes social media to raise awareness about his condition.
