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.

Newborn Baby Cries All Day No Matter What Parents Do, after a While They Check His Crib – Story of the Day

Walter returns home from work to find his baby son crying. His wife has tried everything to quiet their son, but nothing works. Walter decides to check the crib and is shocked by what he finds there.

An ear-splitting wail echoed through the house as Walter entered from the garage. His wife, Abby, sat in the kitchen, and by the distressed look on her face, he knew Logan’s cries were bothering her again.

“Oh, honey,” he says and hugs her from behind. “How long has he been crying like that?”

“I’ve tried everything, Walter!” Abby broke down into sobs. “He’s been fed, changed, bathed, and burped! I even took his temperature! I don’t know what to do now. He keeps crying!”

After becoming parents a month ago, everything in the couple’s lives changed. And if there was something that really distressed Walter, it was Logan’s cries.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

“Come, we’ll figure this out together,” Walter said and took Abby to Logan’s room.

He cheerfully approached Logan’s crib. But all he saw in the crib was a dictaphone and a note. Walter pressed the stop button on the dictaphone, and Logan’s cries stopped.

“What did you do?” Abby called from behind. Walter wasn’t listening. He held the note and zoned out. It wasn’t until Abby snatched the note from his hand and opened it that he realized what had occurred.

“I warned you that you’d regret being rude to me.

If you want to see your baby again, leave $200,000 in the luggage storage lockers near the pier.

If you go to the police, you’ll never see him again.”

“Oh my God!” Abby gasped. “What does it mean? Was I rude to someone? Were you? Who would kidnap Logan?”

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Walter recalled the janitor he’d mistreated at the maternity hospital. He was bringing a cute bear-shaped pot for Abby while she was admitted to the hospital, but the pot broke when he tripped over the janitor’s broom.

Furious, Walter called the man awful names, and the janitor said, “You’ll regret it!”

“We’ll have to go to the police, honey,” Walter said, snapping out of his thoughts. “It must be him!”

“What? The note says we’ll never see Logan again if we go to the police, Walter. We should just pay the ransom!”

“We don’t know if he’ll return Logan if we do that. Think about it, honey. This guy is a janitor… there’s no way he’d know if we went to the police, and since we know where he works, they might be able to go straight to the maternity hospital, arrest him, and bring Logan home to us.”

Abby agreed.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Walter parked their car outside the station. He and Abby were about to exit the vehicle when Walter’s phone buzzed with a message.

“This is your first and last warning. If you enter that police station, your kid’s going into the bay. Get the money to the location mentioned below.”

Abby gasped as she read the message, and Walter looked around, trying to spot the kidnapper. But there were too many people. The only way to rescue Logan now was to pay the ransom.

Walter decided to drive to the bank right away, but Abby’s condition deteriorated. She threw up once and was about to throw up for a second time. It was better to drive her home, Walter decided.

“Don’t hate me for it, honey, but that’s the best for you,” he said. And Abby didn’t protest.

“Fine…But Walter…does that kidnapper even know about caring for a newborn?” she asked and broke down into tears.

Walter said nothing and drove her home. But his imagination wasn’t immune to dark thoughts. He kept imagining Logan in a dark room, crying for help that never came.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Somehow pulling himself together, Walter drove to the bank. Then he visited the storage locker mentioned by the kidnapper and placed the money inside it.

There were too many people around for him to spot the janitor, but Walter knew he would be somewhere nearby, watching him. So Walter returned to his car, drove a short distance, and parked around the lockers again. It wasn’t long before he spotted the janitor from the maternity hospital.

The janitor opened the locker. Walter sat up straighter, but then a tourist group walked past, hiding the janitor from view.

“Move it!” Walter snapped.

Painful minutes stretched out as the tourists headed toward one of the statues. After the last few people in the group eventually passed the lockers, Walter swore. The janitor had disappeared.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Walter barely dared to breathe as he scanned the crowd. The man had been wearing the sort of flashy shirt sold in the more eclectic, hippie-themed stores, so he shouldn’t have been hard to spot.

There! A wave of relief washed over him as Walter spotted the janitor crossing the road. He was carrying the bag of money Walter had placed in the locker. Walter leaped from his car and followed him.

The man led him around a parking lot, past a variety of restaurants and several museums before he turned into a bus station. They were heading toward another row of lockers.

The janitor placed the bag inside a locker. When he turned around, Walter was ready. He shoved the janitor up against the lockers and held him there with his forearm.

“Where is my son?” Walter demanded. “I’ve done everything you asked, you jerk; now return Logan to me!”

“Look, I was offered $100 to collect the package and then drop it off here,” the man said. “I don’t know about your son!”

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

“Don’t you dare lie!”

“I’m not! Some guy paid me to deliver the package! I ran into him in the parking lot after work one day, but he was standing with the light behind him, so I didn’t see his face. I have two kids of my own. I’d never hurt someone else’s child.”

Something about the janitor’s eyes told Walter the older man wasn’t lying. He let the man go, then opened the locker. But it was empty. Somebody had cut a hole in the back.

Walter jogged around to the back of the lockers. The hole was covered from the back with a thin steel plate, loosely secured by two screws. Nobody around was carrying a bag like the one he’d placed the money into.

Walter didn’t know how to break the news to Abby. Logan was their miracle baby. They’d been struggling for years before they conceived him. And now, he had lost his only chance to get Logan back.

Walter entered his home. He checked all the rooms downstairs but didn’t find Abby anywhere. He went upstairs to check their bedroom and noticed Abby’s things were gone.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

At first, Walter suspected she was kidnapped. He called her. Countless times. But she never answered. Then it dawned on him that the kidnapper wouldn’t have taken all of Abby’s things. Even her hand lotion was missing.

Walter was crushed, to say the least. How could Abby do this to them? No wonder she’d been so eager to return home after feeling sick. She had also insisted they pay the ransom. Abby was Logan’s kidnapper. Did she have an accomplice?

The only thing that consoled Walter’s heart was that the ransom money was fake. He would find a way to get his son back.

Walter drove to the maternity hospital where Logan was born, and near the vending machine, he found the man he was looking for—a doctor.

“Hi,” Walter approached him. “I hope you can help me. I need someone to call my wife—”

“I’m not a phone service,” the doctor replied sharply.

“You don’t understand. I’m willing to pay you handsomely for your assistance, doctor, and your silence.”

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

The doctor studied Walter through narrowed eyes. He slowly smiled as Walter explained his situation and told him what he wanted the doctor to tell Abby.

Walter then retrieved his wallet and furtively showed the doctor the dollar bills inside it. The man nodded. “Okay, we have a deal. Come with me!”

Walter followed the doctor to a nurse’s station on the second floor. All the nurses were checking on their patients, judging by the activity in the hallways. Nobody took much notice as the doctor lifted the phone and dialed Abby’s number.

“Good morning, Mrs. Taylor; this is Dr. Jones from the maternity hospital. I’m calling to inform you that we just discovered something very serious in one of the routine tests we performed on your son after he was born. He needs to come in for treatment immediately.”

Walter heard Abby’s emotional outcry from the other side of the nurse’s station but couldn’t make out her exact words.

“I’m sorry, but I can’t discuss the details over the phone. All I can say for now is that he has a rare genetic condition. I’m sure he does seem fine now, but that could change at any moment. He’s at a higher risk for SIDS and several other life-threatening conditions. You really need to bring him in today, Mrs. Taylor.”

Dr. Jones ended the call a few minutes later and showed Walter a thumbs-up.

“She’s going to bring the baby in ASAP.” Dr. Jones held out his hand and wriggled his fingers. “I did my bit. Now it’s time for you to pay up.”

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Walter paid the doctor and went back downstairs. He wandered around for a few minutes before his phone started ringing. His lip curled in disgust when he checked the caller ID.

“You have some nerve to phone me after what you did, Abby,” Walter said. “Where’s Logan? I demand you bring him back.”

“Says the man who doesn’t even care enough about him to pay the ransom!” Abby shrieked. “That money was all fake, you tight-fisted jerk. Logan needs to see a doctor urgently, and I can’t take him because of you. Where’s the real money, Walter?”

“In my account, where it’s been all along. What’s wrong with Logan, or is this just another scheme to get my money?”

Abby swore at him and began to cry. “I told you; he’s sick! You’ve got to send me the money so he can receive treatment. He’ll die without it.”

“I won’t let my son die! I’ll pay,” Walter replied and hung up.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Hearing Abby confirm she was behind Logan’s kidnapping broke his heart all over again. It took a few minutes before he pulled himself together enough to send her an immediate payment via his money transfer app. Now, all he had to do was wait.

***

Tears trailed down Walter’s cheeks when his little brother, James, entered the hospital with Abby. James held Logan against his chest while Abby spoke to the receptionist.

It seemed like everything was moving in slow motion as the police officers and FBI agents came forward and surrounded Abby and James. Walter had informed the cops beforehand.

“You’re under arrest for kidnapping!” an FBI agent called out. “Hand the child over, nice and slowly, and raise your hands.”

“Get away from us!” Abby shrieked as she moved to stand between the FBI agent and Logan. “My son is sick. He needs to see a doctor.”

“No, he isn’t,” Walter called out as he approached the group. “There’s nothing wrong with Logan at all.”

Abby’s gaze locked onto him. Walter watched as the fear and uncertainty in her eyes shifted into red-hot fury. She rushed forward as though to attack him. But the police tackled her. She and James were arrested.

Walter hugged his son, relieved to have him back. But Abby wasn’t done yet.

“You think you’ve won? Logan isn’t even yours! You couldn’t get me pregnant, remember? But whatever’s wrong with you clearly doesn’t run in the family!” she yelled.

For illustration purposes only | Source: Pexels

For illustration purposes only | Source: Pexels

Walter froze. He looked at his brother, who wouldn’t even raise his head to look at him. It pained Walter. But nothing mattered because he had Logan with him.

“I will adopt him if that’s what I have to do!” he shot back. “I will watch him grow up while you two rot behind bars!” he said and left with Logan.

Tell us what you think about this story, and share it with your friends. It might brighten their day and inspire them.

If you enjoyed this story, you might like this one about a woman who spots her husband taking his wedding ring off before leaving for work. She decides to follow him, only to discover something shocking.

This piece is inspired by stories from the everyday lives of our readers and written by a professional writer. Any resemblance to actual names or locations is purely coincidental. All images are for illustration purposes only. Share your story with us; maybe it will change someone’s life.

Related Posts

Be the first to comment

Leave a Reply

Your email address will not be published.


*