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.
Anne Hegerty, 66, from The Chase, shared her worries about dating. She talked about how her longest relationship only lasted four months and that she has never had children.
Anne Hegerty, known from The Chase, shared that her biggest fear about dating is having a man invade her personal space.
The quizzer, who was diagnosed with autism at 45, opened up about her challenges, mentioning a time when she unplugged her phone to stop a boyfriend from contacting her.
At The Paul Strank Roofing Charity Gala in Kensington, London, she honestly said that she thinks she would make a terrible partner.
Anne, 66, said, “I really struggle with being close to others and having anyone else in the house.
“I think a lot of autistic people don’t get married or settle down.”
Anne explained, “I don’t even have pets because of this, and my ability to live with other people is getting smaller. I need a lot of alone time.
“I always feel like I need more space than anyone can give me. If I wanted a relationship, I could find one, but honestly, I don’t.”
She also mentioned that her longest relationship only lasted four months. Reflecting on that time, she said, “It only worked for those few months because I was in Manchester. I kind of set it up so it wouldn’t last.”
In the end, she wrote to him to end things. “I remember crying with relief and then crying with guilt,” she shared.
Anne felt overwhelmed during that relationship. “Sometimes, I unplugged the phone because he tried to call me every day. I just wanted it to be over.
“I’d sit there waiting for the phone to ring, thinking, ‘Don’t phone, don’t phone, don’t phone!’ Other times, to get over the waiting, I’d call him, but that made him think I wanted to talk. I really just wanted to end it. I didn’t want to talk to him or anyone!”
Anne joked that she hasn’t lacked offers from admirers who seem to like her “Mrs. Trunchbull” Governess outfit.
She said, “I’m sure some people are attracted to the whole look of The Governess. I think there are some who might be interested if they let me.”
Anne said, “I do meet attractive men, but I know it won’t work out. I feel like it’s not fair to them because I won’t treat them well.”
She added, “I always want more space than they can give me. If I wanted a relationship, I could find someone, but I don’t.”
She thinks it’s better not to date at all and enjoys having men as friends more than women. She recalled a quiz she attended in June, where a woman pointed out they were the only two women in the room, but Anne hadn’t even noticed because she was talking to her male friends.
Anne also shared that this is part of why she never had children, even though she is great with kids. “I did want children, but I knew I wouldn’t be able to handle it very well.”
About 20 years ago, two kids from her neighborhood used to come over. “We limited their visits to just one hour a day, but they always wanted to stay longer. They were wonderful kids, and we’re now friends on Facebook, but I couldn’t handle that for more than an hour.”
Anne takes her role as godmother to Mark “Beast” Labbett’s eight-year-old son, Lawrence, very seriously.
She said, “Lawrence’s birthday is at the end of November, so I usually send a birthday and Christmas present at the same time—but they are not the same gift. My parents had winter birthdays, and I knew they hated getting just one present for two celebrations.”
Anne joked that one of the gifts she gave Lawrence was a bit inappropriate—a toy crossbow. “So, weaponry,” she laughed. “But lately, I’ve been giving him Minecraft vouchers since he really loves that.”
She also mentioned that she has spent Christmas alone for the past 40 years. That’s why she’s especially happy to be playing the Fairy Godmother in this year’s panto, Cinderella, in Scarborough.
Anne, who was on I’m A Celebrity… Get Me Out Of Here in 2018, said, “Now that I’m in panto, I can say, ‘Sorry, I’m in Scarborough!’ and that’s my only day off.”
She sees it as a great day off. Even though many people invite her to spend Christmas with them, she prefers not to. “I don’t do Christmas dinner or a tree. When I was a kid, I just remember all the pine needles everywhere!”
Earlier this year, Anne took on another acting role, making a cameo as a neighbor in a film called Exorcising Barry, which is about a man obsessed with a demon.
Anne said that any chance of going to Hollywood is out of the question.
She explained, “America wouldn’t want me because I’m fat. I have a friend who went there for work, and even though she looks amazing, they told her she needed to lose weight. I’m fine with how I am, but they don’t like fat British actresses.”
Despite this, she has had great success in Britain. Talking about The Chase’s recent National Television Award win, she said, “I’m so happy. Bradley Walsh is amazing. It’s been 14 years, and I love it.”
She added, “Other kids used to sing in front of the mirror with a hairbrush. When I was younger, I practiced being interviewed for when I became famous. I don’t know why, but it’s always been my dream.”
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