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.
My son and his wife shamed me for wearing red lipstick. I decided to teach them a lesson
The Spark: A Family Dinner Gone Wrong
Edith had always been a vibrant woman, a beacon of confidence and style, even at 75. Her red lipstick was her signature, a mark of her vivacious personality. But that evening, as she prepared for a family dinner, she had no idea that her choice of makeup would ignite a firestorm.
As she carefully applied her favorite shade of red, she felt a sense of nostalgia and pride. This lipstick had seen her through countless milestones, from job interviews to romantic dates with her late husband. It was more than just makeup; it was a symbol of her enduring spirit.
Her son arrived early, catching Edith in the act. With a sneer, he commented, “Mom, you look like a desperate old clown trying to cling to your youth. It’s embarrassing.”
The words hit her like a slap. She paused, the lipstick trembling in her hand. Before she could respond, her daughter-in-law, with a smug smile, chimed in, “Oh, I agree. Red lipstick is not for older people. I think you should stick to what other people are doing.”
Edith’s heart pounded in her chest. The audacity of their remarks left her momentarily speechless. But then, a surge of defiance surged through her. “Honey, why don’t you mind your own business,” she snapped, her voice steady and cold.
Her daughter-in-law looked taken aback, her confidence momentarily shattered. “Sorry, Edith, we just don’t want you to look like a clown,” she muttered, clearly unprepared for Edith’s retaliation.
Her son, trying to regain control of the situation, added with a smirk, “Okay, Mom, enjoy the circus.” His wife let out another laugh, and they both walked away, leaving Edith in a storm of emotions.
From Hurt to Rage: The Turning Point
For a few minutes, Edith stood there, her reflection in the mirror a painful reminder of their cruel words. She felt a deep sadness, the kind that comes from betrayal by those you love most. But as she sat in the corner, the sadness began to morph into something else: rage.
How dare they mock her? How dare they try to strip her of her dignity and individuality? She had spent her entire life building her confidence, refusing to conform to societal expectations, and now, her own family was trying to tear her down.
Edith knew she had to act. This wasn’t just about red lipstick; it was about respect and standing up for herself. She decided to give them a lesson they would never forget.
The Plan: A Week of Preparation
Over the next week, Edith meticulously planned her revenge. She reached out to a few trusted friends and even roped in her neighbor, Mrs. Jenkins, a woman of similar spirit and age. Together, they devised a scheme that was both subtle and impactful.
First, Edith decided to host a grand dinner at her house, inviting not only her son and his wife but also other family members and friends. The guest list was carefully curated to include people who respected her and those who could influence her son and his wife.
She spent days preparing, ensuring everything was perfect. She cooked her son’s favorite dishes, set the table with her finest china, and decorated the house with beautiful flowers. But the centerpiece of her plan was her appearance. On the day of the dinner, Edith wore a stunning red dress and, of course, her signature red lipstick.
The Showdown: A Lesson in Respect
As the guests arrived, Edith greeted them with warmth and grace, her red lips a bold statement of her defiance. Her son and his wife were among the last to arrive, their expressions quickly turning sour upon seeing her.
The dinner began smoothly, with lively conversations and laughter filling the room. But Edith had a surprise in store. As dessert was served, she stood up to make a toast.
“Thank you all for coming,” she began, her voice strong and clear. “I’ve always believed in living life to the fullest and embracing who you are, no matter what others think.”
She glanced at her son and his wife, who were shifting uncomfortably in their seats. “Last week, I was told that I should stop wearing my favorite red lipstick because it’s not appropriate for my age. But I believe that confidence and style know no age.”
The room fell silent, all eyes on Edith. “So tonight, I want to celebrate all of us who refuse to let society dictate how we should look or act. To those who embrace their true selves and live with confidence and grace.”
Her friends and family erupted in applause, many raising their glasses in agreement. Her son and his wife looked mortified, their earlier smugness replaced by embarrassment.
Edith smiled, her red lipstick gleaming under the chandelier. She had made her point loud and clear. Age was just a number, and no one had the right to dictate how she should live her life.
Aftermath: A Changed Dynamic
In the weeks that followed, the dynamic between Edith, her son, and his wife changed. There were no more snide comments or mocking laughs. Her son even apologized, admitting he had been out of line. His wife, too, seemed to have learned her lesson, treating Edith with newfound respect.
Edith continued to wear her red lipstick proudly, knowing that she had stood up for herself and set an example for others. She had shown that age was not a barrier to confidence and self-expression, and in doing so, she had reclaimed her dignity and respect.
Her bold stand had not only silenced her critics but also inspired others to embrace their true selves, proving that sometimes, the most powerful lessons come from the most unexpected places.
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