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 Stepdaughter Insisted I Reassign All Her Deceased Father’s Possessions into Her Name – I Complied, Yet She Was Unpleased
The emptiness of George’s departure permeates their residence, his presence enduring in the shirt Mariana grips nightly. However, it wasn’t his passing that devastated her… it was her stepdaughter Susan’s insistence on inheriting his wealth. When she reluctantly agreed, an unexpected twist left Susan enraged and Mariana strangely content.
Progressing past the death of a dear one is always challenging. At times, I still sense my husband George’s voice echoing in my mind. I awaken holding his cherished shirt, his fragrance still clinging to the material. Yet, as I mourned him, my stepdaughter’s actions… they utterly broke me…
I am Mariana, aged 57, wed to the kindest man, George, for 25 years. He had a daughter, Susan, aged 34, from an earlier marriage.
Our bond with Susan was once good. She addressed me as “Mom” and filled the gap in my heart from not bearing my own children. I never viewed her as “another’s” child. I cherished her as my own daughter, truly.
When Susan wed her chosen partner, George and I were thrilled. But then, everything deteriorated when George received a terminal cancer diagnosis.
Susan’s visits reduced from weekly to monthly, then ceased entirely. She seldom visited her father, occasionally phoning to inquire about his health.
One day, she posed a question that tore me apart. “How long does he have left?”
Clutching the phone tightly, my voice shook. “Susan, your father isn’t an item with an expiration date.”
“I just need to know, Mom. I’m swamped, you know that… I can’t come by often,” she responded.
“Swamped?” I repeated, my tone filled with disbelief. “Too swamped to visit your dying father?”
She exhaled deeply. “Look, I’ll attempt to come soon, okay?”
But that “soon” never materialized.
Then, the dreaded day arrived. The hospital informed me that George had passed away peacefully.
I was devastated, barely able to stand as the reality sank in. My beloved George, gone.
Shockingly, Susan didn’t attend his funeral. When I called her, she promptly excused herself.
“I’m expecting, Mom,” she stated, her tone strangely indifferent. “The doctors advised against lengthy travel due to some medical concerns.”
I swallowed hard, holding back tears. “But Susan, it’s your father’s funeral. Don’t you wish to bid him farewell one last time?”
“I can’t jeopardize my baby’s health,” she curtly replied. “You understand, right?”
I didn’t, not truly, but I nodded silently, forgetting she couldn’t see me. “Of course, dear. Take care.”
As I sat near my husband’s coffin, I couldn’t dismiss the notion that our relationship had irrevocably changed.
Six months post-George’s death, I was startled by a loud knock at my door. Opening it, I saw Susan and her husband Doug, along with a severe-looking man in a suit.
Susan entered without greeting. “Mom, we need your signature on some documents.”
Baffled, I blinked. “Which documents?”
Doug handed me a stack of papers, including a blank sheet. “Just sign these. They’re for transferring all the properties into our names.”
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