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.
amie Lee Curtis overwhelmed with grief makes the heart-wrenching announcement
About her close friend and Curb Your Enthusiasm star Richard Lewis, who passed away on Tuesday at the age of 76 after a heart attack, Jamie Lee Curtis shared some very heartbreaking remarks.
The comedian and the 65-year-old actress, who portrayed the witch in Halloween, costarred in the sitcom Anything But Love for four seasons between 1989 and 1992.
After learning the tragic news of the actor’s passing on Wednesday, she shared a post on her personal Instagram profile. The first person to break the news was Bette Midler.
Curtis hailed the late singer in a lengthy statement for being “the reason I am sober” after sharing a number of vintage photos of the two of them.
Jamie battled an opiate addiction before celebrating 25 years sober this month.
“I recently found out about the passing of my friend Richard Lewis.” I can still clearly picture myself standing on Sunset Boulevard, staring at a poster advertising a stand-up special featuring him. I urged the casting staff to bring him in to try out for the role of Marty Gold, my best friend and potential boyfriend, during the ABC pilot Anything But Love casting process.
“I felt he had a good look.” It isn’t something a strong woman can really accomplish for herself, but someone made me giggle. He mispronounced the word “bundt cake,” but he still played the part, which made me laugh aloud.
Jamie remarked, “He blew everyone else away.” They added in their response that “the chemistry with Richard was so great,” even if they decided not to pick up the pilot for the love triangle show. Might we rework the initial pilot? We ultimately produced the show for two years in this manner.
He performed stand-up comedy as well, but he detested doing stand-up in front of actual audiences. I, however, thought it was fantastic.
In close-up, he would conceal his markings on door frames, objects, and even my face. He also carried a clipboard with his lines scribbled on it at all times. It turns out that he was a really good part actor. It’s hilarious and profound.
“We grieved together over the deaths of our friend and producer John Ritter as well as our friend and co-star Richard Frank,” she remarked.
“Richard expressed his desire for me to obtain another boxed set of show episodes from ABC/Disney in his most recent text message to me,” the actress said to her followers.
“He is also the reason I am sober,” Jamie continued. He was helpful to me. I shall always be appreciative of his kindness.
“He found love with Joyce, and that, of course, along with being sober, was what mattered most to him,” she stated when they discussed his wife Joyce Lapinsky. Writing this brings tears to my eyes.
It’s an odd way to express gratitude to a kind and humorous man. Richard, I hope you laugh till you die. Hannah exclaimed, “My Marty, I love you!” at the conclusion.
Jamie expressed her sadness over the passing of her longtime friend and former co-star in a second post.
She also included a line or two from the Anything But Love theme tune and another old photo of herself with Lewis.
“The great singer-songwriter JD Souther wrote this beautiful theme song for the third and final season of the TV show ANYTHING BUT LOVE, which aired on ABC for a few years,” Curtis said.
Look it up on YouTube and give it a listen. If not, I’ve recorded it for you right here. I’m presenting these to my buddy Richard Lewis today.
She revealed lyrics that read, “We would still be searching for the next big thing and trying not to fall… If we had never met/And the world got on without us/Just as if we were never that at all.”
“Hearts that beat like thunder and anything but love will do”Everything but love would be sufficient for everyone but you.
Celebrities and users of social media, including Larry David, who co-stars on Curb Your Enthusiasm, paid respect to the late Richard Lewis.
He told HBO, “He’s been like a brother to me for most of my life.” “In the same hospital, Richard and I were born three days apart.”
It doesn’t happen very frequently, but he was the sweetest and funniest guy at the same time. “But today he made me cry, and I’ll never forgive him for that,” the comic said in an interview with Variety.
Working alongside Lewis on the popular show, Cheryl Hines stated, “I had the biggest crush on Richard Lewis when I was young.”
“No one was cuter or more attractive on stage than him.” Then, a dream come true, I got to work with him on Curb Your Enthusiasm.
“I became more knowledgeable about Richard and his gifts as time went on.” He was humorous, which is why I fell in love with him, but he was also one of the kindest individuals I’ve ever met.
Cheryl stated, “He would take the time to tell the people he loved how much they meant to him, especially in the last few years.” In between takes on Curb, he told me how much he loved me and how essential I was to him.
“To have Richard Lewis love you.” An actual present. I adore you, Richard. You will be missed. I adore you, Joyce, and Richard’s entire family. Richard, Lawrence, cherished you.But you already know that.
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