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.
This woman only ate one piece of bread a day for 5 years – but look at her now
Despite efforts to accept ourselves at any size and more realistic-looking models in advertisements, a large number of people worldwide suffer from eating disorders on a daily basis.
A Derbyshire lady who overcame anorexia has shared her experience in the hopes that it would support others experiencing similar difficulties.
Annie Windley weighed just 29 kg, or slightly more than four and a half stone, at her heaviest. She was in danger of having a heart attack because of her low weight.
The 21-year-old Woolley Moor resident has been battling anorexia for more than five years, during which time she has required extensive care, medical therapy, and multiple hospital stays. Annie, on the other hand, is in great shape and has recovered thanks to her passion of jogging. In October of last year, I ran the Chesterfield Half Marathon.
She said, “I had the happy awareness that the process of rehabilitation is amazing and should be exhilarating, remarkable, and amazing.
I suppose my anorexia will always be a part of me, even though I’ve learned to manage it and get over my obsession with eating. “It is never too late to make a positive change.”
Annie was first diagnosed with an eating disorder in 2012. When her recuperation finally began two years later, she faced numerous challenges, including being sectioned and experiencing uncontrollably rapid weight loss.
In October of 2017, I began battling more fiercely than I had ever done before; she went on, “I can’t say exactly what occurred, but this time, it was just for myself.”
The battle was amazing; every day was filled with agonizing emotions and remarkable bravery. I’m at my heaviest since 2014 after gaining three stone in the last four months.
Annie claims that she gained the realization that a person’s actions, their mannerisms toward others, and their degree of kindness matter more than their physical stature. According to her, these are the things that truly matter in life.
“These are the things that are essential to you and will bring you happiness.” Rather than organizing your entire day around eating or worrying about how to restrict, use that time to focus on something that matters to people.
Be a kind friend and daughter, make jokes, and engage in conversation with them. Exercise is typically believed to enhance mental health, and Annie is no different. Her passion for running gave her something to strive for, helped her heal, and kept her on course.
Her recuperation was aided by her participation in Chesterfield’s yearly half marathon. She ran the kilometers during her training, putting in a great deal of work and determination to complete the difficult course.
I use my morning run as an opportunity to remind myself of how fleeting and important life is. I can live a more flexible, free life now that I’m well.
I’m fortunate to have strong legs and a pounding heart, so I don’t waste time worrying about meals or watching calories. Exercise is a celebration of what your body is capable of, not a way to make up for what you ate.
“Pay attention to your desire to succeed and your excitement for where you want to go.” Annie claimed that all she had ever done was avoid meals like pizza and chocolate because the voices in her head turned them into numbers and percentage signs.
She has thankfully altered her viewpoint and offers guidance to those who have similar views.
There are bad days when you think recovery isn’t for you, feel “fat,” and lack the desire to eat. However, that is the very reason we have to continue.
We have to demonstrate to our disorders our ability to do so. We don’t want to spent our entire lives regretting and feeling sad about the things our anorexia prevented us from accomplishing.
Watch the video below to see her entire story:
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