Mom of Boy with Rare Condition Shares Their Life, People React Differently

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.

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.

15+ Pics That Need the Full Story to Make Sense

In 2011, 27 million pieces of content were shared online every day. Today, no less than 3.2 billion images are shared on a daily basis. It takes us a mere couple of seconds to snap a picture, and we’re not limited to a roll of film anymore. As a consequence, we snap pictures of everything, and sometimes we can’t keep them to ourselves.

Bright Side has a game for you — we prepared a list of images and your task is to figure them out without reading the explanation. Are you in?

1. “I wondered what my dad’s prosthetic finger would look like on my toe.”

2. “I don’t paint often, so I was really proud of myself for remembering to wear gloves this time.”

3. “My roommate thought I made cinnamon rolls. I actually made bacon. He was not happy with his finger scoop.”

4. “My treadmill kicked all the dirt from my shoes into a ’heavy’ and a ’light’ pile.”

5. “The fog during my flight makes the city seem like it hasn’t rendered.”

6. “The imprint of me lying face down in the snow looks like it’s actually popping out from the snow.”

7. “The border of my tattoo turned into a stretch mark during my first pregnancy. Now it looks 3D.”

8. “This truck looks like it came out of a wormhole. It’s actually carrying a wind turbine blade.”

9. “I got a cramp on the side of my hand, and you can actually see it.”

10. “I took a photo of my new faucet LED the exact moment it turned from red to green (or green to red).”

11. This is what a scan of a moving hand looks like.

12. “These aren’t actually bricks, it’s just white paint on red cement.”

13. “This tire went flat, was driven on, damaging the sidewalls, and then reinflated.”

14. “I made a snowman out of a melting paste. Here it is after an hour.”

15. “This is what happens when you wear socks and shoes outside every day for 20 years.”

16. “Shaved my hands, probably shouldn’t have. I just felt like my hands were too hairy.”

17. “Discovered that my tooth implant doesn’t glow like the rest of my teeth under a black light — regular photo for comparison.”

Which of these pics got you guessing about its backstory? What’s the last picture you took on your phone that only makes sense if you explain it? Share it with us in the comments.

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