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.

Donna Mills Defied the Odds at 54 – Meet Her Beautiful Daughter Who’s Now Pregnant at 30!

Donna Mills has always done things her own way, both in Hollywood and in her personal life. At 54, she made the bold choice to become a mother, even though some people doubted her ability to raise a child at that age. Now, 30 years later, she is excited to become a grandmother.

For many years, Donna Mills was a well-known face in Hollywood, famous for her roles on popular TV shows and her passion for acting. But she had a strong desire for something more. This led her to step away from her successful career and embrace motherhood, even when many thought it was too late.

Getty Images

Although some people were surprised by her choice, Donna’s determination remained strong. Her child became the most important part of her life, and she has treasured being a mother more than any other role.

Now, as her life comes full circle, Donna is about to become a grandmother. Her story is one of perseverance, love, and defying what society expects.

Defying Society’s Expectations and Choosing Motherhood
When Donna decided to adopt her daughter, Chloe, at 54, many people were doubtful. They thought she was too old to raise a child and often said things like, “You’ll be too old to keep up with a little toddler running around.”

Getty Images

But Donna didn’t let these doubts stop her. Despite the criticism, she was sure she could handle it. “I never felt older than the other mothers, who were probably in their 20s,” she said.

Before adopting Chloe, Donna was deeply focused on her acting career. She had become well-known in Hollywood, starring in shows like *Knots Landing*. However, despite her success, she felt something was missing. “I was jealous every time I saw a kid run up to their mom and say ‘mommy, mommy!’” Donna once admitted.

The desire for a child grew stronger over time, and Donna knew her life wouldn’t feel complete without one. “As wonderful as my career was, as wonderful as my life was, there was a big hole,” she explained.

Putting Her Career on Hold for 18 Years
After adopting Chloe, Donna made a surprising and significant choice. She stepped away from her thriving acting career for 18 years to focus completely on being a mother. At first, Donna managed to balance both work and parenting.

During Chloe’s early years, Donna accepted roles in TV movies and took her daughter along with her wherever she went. However, when Chloe started school, Donna realized she couldn’t keep up the same pace with her career.

“I wasn’t going to go out of town for two months at a time,” Donna explained. “I didn’t become a mother to hand her over to a nanny.”

Although stepping away from the career she had worked so hard to build was a big change in her life, Donna never regretted it. She has even encouraged others to think about having children later in life, sharing her belief that it helped her be more present and focused as a mother.

“If you want to focus on your career, I believe having a child later in life is better than having one early,” she advised. For Donna, her decision to adopt Chloe at 54 gave her the chance to give motherhood her full attention, something she felt wouldn’t have been possible earlier in her career.

Donna Mills is also excited for this next chapter, knowing that the strong bond she built with Chloe will now extend to the next generation.

Related Posts

Be the first to comment

Leave a Reply

Your email address will not be published.


*