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.

I Was Humiliated at a Restaurant for My Age – So I Planned My Revenge

At 82, Everly faced discrimination when she was told she was “too old” and dressed “inappropriately” for a trendy restaurant. In response, she made a Facebook post that went viral, sparking outrage and calls for change.

My name is Everly, and I love trying new things, even at my age. One Thursday morning, my daughter Nancy surprised me with a visit to my garden shop. She suggested, “Mom, let’s try that new restaurant downtown!” Her excitement made me eager to go.

We both dressed simply; I wore a floral blouse and khaki pants, and Nancy was in jeans and a T-shirt. For us, it was about spending time together, not how we looked.

As we drove to the restaurant, we talked about how excited we were to make new memories. But our simple outing took an unexpected turn.

Source: Midjourney

When we entered the restaurant, we were greeted by loud music and chatter. The place was lively, filled with a younger crowd who were stylishly dressed, making us feel out of place. Still, we didn’t mind; we were there to enjoy ourselves.

However, as we stepped inside, I noticed the host looking us over. His smile faded for a moment before he led us to a table by the window. It was a nice spot, but our experience quickly changed.

Source: Midjourney

A young waiter came over, and while he initially seemed polite, his attitude shifted as he noticed our appearance. “I’m sorry,” he said, sounding less than sincere, “but this place might not be suitable for you.” His words stung.

He continued, “You seem too old for our usual clientele, and your outfits aren’t appropriate for the vibe here.” Nancy turned red with anger, and I felt a deep sadness at being judged for my age and how I looked.

Source: Midjourney

The waiter wasn’t done. He said we had to leave “so as not to spoil the appetite of our guests.” Before we could respond, he signaled two bodyguards who came to escort us out.

The embarrassment was overwhelming. I felt the eyes of other customers on us as Nancy squeezed my hand tightly. We quietly left, feeling hurt and rejected.

Source: Midjourney

Outside, Nancy was furious. She took out her phone and snapped photos of the bodyguards. “We need to share this, Mom. People should know how they treat others,” she insisted.

Later, in her kitchen, we posted the pictures on Facebook. Nancy shared our story, highlighting how we were judged unfairly because of our age and appearance. She tagged the restaurant and asked her friends to spread the word.

The post quickly went viral, with thousands of shares and comments. People expressed their shock and shared their own experiences with ageism. The restaurant’s ratings plummeted as customers voiced their disapproval.

Source: Midjourney

Amid the uproar, Mr. Thompson, the restaurant owner, reached out to me. He was shocked and apologetic about the incident. “Mrs. Everly, I’m so sorry. I had no idea this happened,” he said, revealing that the waiter was his son.

He invited me back for a complimentary meal and offered a personal apology. I appreciated his honesty but told him, “It’s not just about a meal. It’s about how people are treated.”

Mr. Thompson agreed and said he had talked to his son about respect for all customers, regardless of their age or attire. He emphasized that his son would not inherit anything until he understood these values.

Our conversation was hopeful. It showed a willingness to make amends and recognize the need for change. As we ended the call, I felt validated yet still aware of the larger issue of ageism.

A week later, I dressed in my best silk dress—a deep blue that highlighted my eyes. I was ready to return to the restaurant, not as a victim, but as a woman who deserves respect.

Source: Midjourney

Entering the restaurant again, the door chimes felt louder this time. The atmosphere was the same, but I felt empowered. Mr. Thompson welcomed me with a warm smile and took me to a lovely table by the window.

The waiter, Mr. Thompson’s son, approached me with hesitation. “Mrs. Everly, I’m very sorry for how I treated you last time. It was unkind,” he stammered, looking genuinely remorseful.

His apology seemed sincere, and Mr. Thompson added, “My son and I have discussed this situation. I made it clear that we must respect all customers, no matter their age or how they dress. He will not be part of this business if he doesn’t embrace those values.”

Satisfied with their commitment to change, I enjoyed my meal. It tasted wonderful and felt like a celebration of respect and understanding.

Source: Midjourney

After returning home, I posted an update on Facebook. I shared photos of the meal and the apologies I received. “Change is possible,” I wrote, “when we stand against injustice and those in the wrong are willing to listen and learn.”

Reflecting on this experience, I realized the power of one voice amplified by social media. It was about more than just a meal or an apology. It was a reminder that everyone deserves respect, regardless of age or appearance. This ordeal showed me the strength of my voice and the importance of standing up for my values.

As I reflected on the entire experience, I felt a sense of empowerment. This journey taught me that standing up for myself and others can lead to meaningful change. The response from the community reminded me that many people share the same struggles and that we must support one another in the fight against ageism and discrimination.

I continued to receive messages of support from friends and even strangers who appreciated my story. It was heartwarming to see how a single act of injustice could spark conversations about respect and dignity for everyone, regardless of age.

In the weeks that followed, I became more active in my community, attending local meetings and advocating for inclusivity. I wanted to ensure that no one else would face the same humiliation I did. I also kept in touch with Mr. Thompson and his son, encouraging them to foster a culture of respect in their restaurant.

Through this ordeal, I learned that our voices can make a difference, and our experiences, no matter how painful, can lead to positive change. I felt grateful for my daughter Nancy, who stood by my side and took action when it mattered most. Together, we had turned a hurtful moment into a powerful opportunity for growth and understanding.

As I walked through my garden one sunny afternoon, I smiled, knowing that I had turned a painful experience into a catalyst for change. I looked forward to more adventures with my family, always reminding myself that age is just a number and that everyone deserves to be treated with kindness and respect.

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