Logan Pacl stands out among teenagers. At 17, he faces a rare illness known as Sanfilippo syndrome. Often called “childhood Alzheimer’s,” this cruel disorder gradually takes away a child’s cognitive skills, mirroring the effects of Alzheimer’s in older people. But he keeps fighting and uses social media to spread awareness about his condition.
At first, everything seemed normal.
Logan Pacl’s life is a battle against time. Diagnosed with Sanfilippo syndrome, often known as “childhood Alzheimer’s,” the 17-year-old from Silverdale faces a relentless genetic disorder that viciously strips away the very essence of childhood. Caused by a single defective gene, this neurodegenerative disease attacks the brain and spinal cord, leaving behind a cruel wake of lost abilities, seizures, and constant pain. It’s a ticking time bomb, as most children with this terminal illness don’t survive beyond their mid-teens.
For Logan’s family, the heartbreak began early. Born in 2007 with his twin brother Austin, Logan seemed like any other healthy baby. Both boys hit their developmental milestones—until Logan began to fall behind. A year in, the red flags emerged: while Austin was speaking, Logan remained silent. The difference between the brothers grew, signaling the start of a devastating journey.
Sanfilippo syndrome doesn’t just rob children of their future—it erases their past.
Then the news of the diagnosis hit the parents, something no one could have anticipated.
As Logan’s condition worsened, with chronic infections and a noticeably swollen belly, Noelle and William were left searching for answers. In January 2010, they learned that Logan had Sanfilippo syndrome, a terminal illness with no cure or treatment, and a life expectancy that typically extends only into the late teens. “I’ll never forget the day we got the phone call. The genetic counselor on the other end went on and on, and all I thought was, well get to the part on how we fix this. Then she said it, ’This disease is terminal, and there is no cure or treatment,’” his parents recall.
Noelle recalled her initial reaction, grappling with the news that the disease was terminal. The weight of the diagnosis was overwhelming, leaving her with a heart that felt as though it had dropped into her stomach. The severity of the situation rendered her unable to process much beyond the devastating reality.
Noelle described the experience of mourning not just the child she had but the life she had envisioned for him, a life that was abruptly stolen away. The medical advice they received was minimal and unhelpful, simply advising them to take Logan home and cherish their time with him. This lack of concrete guidance only deepened their sense of helplessness.
In their search for hope, Noelle and William discovered an experimental stem cell transplant through online research. Inspired by the success of another mother’s child, they decided to pursue the same treatment for Logan. So, Pacl went through a tough three-month treatment that was basically a bone marrow transplant. He had to endure chemotherapy to wipe out his immune system so it could accept the new stem cells. It was a risky procedure, but it seems to have helped with some of Logan’s physical symptoms.
His mother uses social media to spread awareness about his condition.
At 17, Logan’s life is very different from that of most teenagers. Losing his ability to speak at a young age was tough for him and his family, but over time, he’s become more easygoing. “Life with Logan is anything but typical. Each day is a battle to maintain the skills he still has,” his mother Noelle said.
Since 2020, Noelle has been a vocal advocate for Sanfilippo syndrome, using TikTok to share her family’s story. Her videos have reached a global audience, raising awareness about the disorder and encouraging other parents to seek early diagnosis for their children.
Although Logan’s future is uncertain, the Pacl family is committed to making the most of their time together. Noelle and William used to avoid thinking about what lies ahead, but now they focus on cherishing every moment with Logan and ensuring he enjoys his time to the fullest. Noelle notes that among Sanfilippo parents, there’s a bit of a joke that all their children seem like siblings, sharing similar features like bushy eyebrows, a low nasal bridge, and large, round stomachs.
Even with the demands of caring for Logan, Noelle keeps life as normal as possible for Logan’s siblings, Austin and Aidyn. She acknowledges that having a brother with special needs can bring its own set of benefits.
As for sharing Logan’s journey online, Noelle remains thoughtful about what she posts. While she plans to continue sharing, she’s careful to respect her family’s privacy. “We just live in the moment,” his mother said. “And if something comes up, and we’re like, we can make that, we’ll do it.”
People in comments react differently.
Mostly people express support and empathy.
- You take the most wonderful care of him. You are the greatest mom. © lauralang1108 / Instagram
But some show a bit of skepticism.
- Genuine question, what is your plan when you are gone? © devin_abq.505 / Instagram
- I just wanna know why it’s necessary. People have to publicize their children’s conditions. Why do people think that we all wanna know what’s wrong with your child? I feel sorry for the parents, but I don’t know why you want to put this all out there. I’m sure you have support group publicizing putting your child out there like this. © marlawomble / Instagram
Today, conversations about living with disabilities are becoming more open, especially on social media. Celebrities are sharing their experiences as parents of children with special needs, helping to normalize these discussions and inspire others. This shift fosters understanding and empathy, creating a more inclusive environment for everyone.
А rаthеr sаd nеws! Miсk Jаggеr is dеvаstаtеd by this lоss
Mick Jagger can’t hold back his tears: “We will all miss him so much…” Jeff Beck, the man who redefined guitar music in the 1960’s, раssеd аwау Thursday at the age of 78. The news of his sudden loss was shаrеd on Twitter by members of his closest family.
“On behalf of his family, it is with deep and profound sadness that we shаrе the news of Jeff Beck’s passing,” the statement said.
“After suddenly contracting bacterial meningitis, he peacefully раssеd аwау yesterday. His family ask for privacy while they process this tremendous loss.”
Regarded among the greatest of all time, Beck constantly pushed boundaries and was a central figure in the key development of rock music.
Throughout the course of his career, which spanned five decades, Beck experimented with new sounds and approaches, which brought freshness in the world of music.
Beck joined the Yardbirds in 1965, replacing Eric Clapton. He stayed with the band for around two years, but it was during that period that he invented use of feedback, something that influenced other great names in the industry.
Speaking of that technique, Beck told BBC Radio 2’s Johnnie Walker, “That [technique] came as an accident.
“We played larger venues, around about ’64-’65, and the PA was inadequate. So we cranked up the level and then found out that feedback would happen.
“I started using it because it was controllable – you could play tunes with it. I did this once at Staines Town Hall with the Yardbirds and afterwards, this guy says, ‘You know that funny noise that wasn’t supposed to be there? I’d keep that in if I were you.’
“So I said, ‘It was deliberate mate. Go away.’”
Once he departed with the Yardbirds, Beck went on to release the single Hi Ho Silver Lining before forming the first incarnation of the Jeff Beck Group in early 1967. The group featured Ronnie Wood on bass, and Rod Steward.
Beck was inducted into the Rock and Roll Hall of Fame in 1992 as part of the Yardbirds and then again in 2009 as a solo artist.
This incredible musician’s passing brought devastation at his many fans and friends. Among them musician Mick Jagger who paid his tribute to Beck. They were close friends, and Jagger recalled asking Beck for help with the lead guitar parts on his first solo album, She’s the Boss, back in 1985.
“We have lost a wonderful man and one of the world’s best guitar players,” Jagger wrote on the social media.
Jimmy Page, who replaced Beck in Yardbirds, also paid a heartfelt tribute. “Jeff’s channeling abilities enabled him to access music from other levels. His approach is unique… When I say I’ll miss you greatly, I’m sure I speak for all your countless other fans,” Page wrote.
The influence Beck had on music and the mark he left can never be replicated. May he rest in peace.
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