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 14-Year-Old Daughter Found a Pacifier in My Husband’s Briefcase — the Shocking Truth Almost Destroyed Me
“Tell you what, sweetie?” I replied, puzzled.
She revealed a baby’s pacifier and exclaimed, “That I’m going to be a big sister!”
Her words stunned me. Since Laura’s birth, more children had become an impossibility for us. The presence of a pacifier in Henry’s briefcase, where Laura had found it earlier that day, churned a storm of confusion and worry inside me.
As the evening quieted down, my mind raced with unanswered questions and fears. I knew I couldn’t just let it go. The next morning, after Henry left for work, I tiptoed into his study. My hands trembled slightly as I placed the pacifier exactly where Laura had found it.
I was determined to uncover the truth behind this unsettling discovery without alarming Henry. Something was amiss, and I needed to find out what it was, not just for my peace of mind but for the sake of our family.
The morning sun had barely risen when I started following Henry’s car from a distance. My heart pounded with a mix of fear and determination as I watched him drive. Normally, he would head straight to his office downtown. But today, he took a different route. My grip tightened on the steering wheel as his car turned into a less familiar part of town.
After about thirty minutes, Henry pulled into the parking lot of a quaint little coffee shop on the outskirts of our city. It looked like a place hidden away from the usual rush, where secrets could be whispered without fear of being overheard. I parked a few cars away and watched as he stepped out, his movements relaxed and unhurried.
My breath caught when I saw a woman approaching him. She was about my age, with a gentle smile. They greeted each other not like strangers, but with a familiarity that sent a chill down my spine. They hugged—a long, comfortable hug that you’d only share with someone you truly cared about.
I felt a sting of betrayal as I watched them sit down at a table outside the coffee shop. They ordered coffee, laughing and chatting with an ease that made my stomach turn. Who was she? Why had Henry never mentioned her? Every cheerful gesture, every shared laugh seemed to amplify my fears and suspicions.
I couldn’t just sit there and watch any longer. My mind was racing with dark thoughts, and I needed answers. I gathered all my courage, stepped out of my car, and walked towards them. With each step, my heart felt heavier. I dreaded the confrontation that was about to unfold but desperate to uncover the truth behind this mysterious meeting.
As I approached Henry and the woman, my feet felt like they were made of lead, each step heavier than the last. Reaching their table, my voice came out sharper than I intended, fueled by a mix of hurt and suspicion.
“Henry,” I called out, ignoring the woman at first. “What is going on here? Who is she?”
Henry looked up, clearly startled by my sudden appearance. The woman turned towards me, her expression a blend of surprise and concern.
“Jen, this is Emma,” Henry said, his voice calm but serious. “She’s… she’s my sister.”
“Sister?” I echoed, my confusion growing. “What are you talking about? You never mentioned you had a sister!”
Henry sighed, a deep, weary sound that seemed to carry more stories than I could have imagined. “I didn’t know until a few weeks ago,” he explained. “After our father passed away, Emma found some old letters he had written. It turns out he had another family before us, and Emma is my half-sister. She reached out to me, wanting to connect.”
Emma, the woman I had mistaken for a threat, offered me a tentative smile. “I didn’t mean to cause any trouble,” she said softly. “I just wanted to know my brother.”
As the initial shock began to fade, we decided to move to a more private corner of the coffee shop. There, Emma shared her story. She told us about being raised by her mother, who had a brief relationship with their father. It was only after he had passed that she discovered letters and other mementos he had left behind, including a baby’s pacifier.
Emma explained that the pacifier was a keepsake from her own infancy. Their father had held onto it. Henry had brought it home, thinking to discuss the possibility of trying for another child with me or perhaps adopting.
Hearing Emma’s story my heart began to soften. I understood the innocence of her intentions and the coincidence of the pacifier. The tension that had built up slowly dissipated. It was replaced by an emerging sense of empathy and curiosity about this new member of our extended family. The day that started with suspicion and dread was turning into a moment of unexpected bonding. It opened the door to new family ties and healing old wounds.
After our conversation at the coffee shop, Henry, Emma, and I decided to continue our discussion in a quieter, more private setting back at our home. As we sat in our living room, the light filtering in through the windows seemed to ease the earlier tension. We talked openly about everything that had transpired, delving into our feelings and the surprising turns our lives had taken.
Henry and I took a moment to reconnect, acknowledging the gap that had formed in our communication. “I should have told you about Emma the moment I found out,” Henry admitted, taking my hand. “I was just trying to figure it all out myself.”
“I understand,” I replied, squeezing his hand back. “But let’s promise to keep no more secrets from each other, no matter what.”
“Agreed,” he nodded, and we both smiled, a weight lifting from our shoulders. We turned to Emma, who had been watching us with a hopeful look. “Welcome to the family,” I told her, and we embraced, sealing our new bond.
A few months later, we gathered to celebrate Emma’s birthday. Our home buzzed with laughter and chatter, a stark contrast to the quiet tension of our first meeting. Laura, who had eagerly taken on her role as a niece, flitted around, helping set up decorations and making sure Emma felt special.
Laura and Emma bonded quickly, laughing and sharing stories. I felt a profound sense of gratitude for the unexpected twists that had brought us closer. Our family had grown not just in numbers but in understanding and love, embracing both the past and the potential for our future together.
This work is inspired by real events and people, but it has been fictionalized for creative purposes. Names, characters, and details have been changed to protect privacy and enhance the narrative. Any resemblance to actual persons, living or dead, or actual events is purely coincidental and not intended by the author.
The author and publisher make no claims to the accuracy of events or the portrayal of characters and are not liable for any misinterpretation. This story is provided “as is,” and any opinions expressed are those of the characters and do not reflect the views of the author or publisher.
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