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.
‘Outdated, punishing rules’ – Mom fights for son, 8, to keep his long hair despite schools rejecting him
Despite the fact that we all have mixed memories of school, we can all relate to the rules. This is a tumultuous moment of highs and lows.
While some rules, like the one against wearing jewelry to athletic events, make sense, it seems unnecessary to send someone home because they brought a certain soda or because they are wearing too much makeup. It also misses teaching opportunities for the kids involved.
The strict dress codes enforced by schools often clash with the times in children’s lives when they want to be different and express who they are.
For one mother and her child, these rules might have been excessive, and they might have kept an 8-year-old boy from getting an excellent education.
Farouk James of London, England, attracts the attention of model scouts due to his amazing hairstyle. He is currently working as a child model and has completed photo shoots in Italy and New York.
But his appearance has only made things difficult for him in the classroom; multiple institutions have rejected him due to the length of his hair.
Bonnie Miller, James’s mother, says she was told when her older brother was in school that his hair was too short.
Bonnie claims that Farouk’s father is from Ghana and that, in accordance with traditional traditions, his parents waited until he was three years old to cut his hair.
“At that point, he was attached— and so was I, to be honest— with his beautiful hair,” Bonnie stated to CBS News. “We kept the hair only.”
The family lives in the UK, where most schools have a policy against guys wearing long hair, even if girls are allowed to.
Bonnie claims that cutting a child’s hair violates their human rights.
“I will not give up trying to persuade governments to put legislation in place to protect children from these outdated, punishing rules,” his mother Bonnie wrote in an Instagram post.
“Despite the fact that Farok has done nothing wrong, you reject him! He will have to say farewell to his buddies when they are all accepted into the universities he so desperately wants to attend.
Because of this, Bonnie even started a Change.org petition to make hair discrimination illegal in the UK.
“We’re assembling a real team and dubbed it the Mane Generation,” Bonnie said. “We are going to fight this until these rules are changed. It also spreads over the entire world, not only the United Kingdom.
Farouk’s mother has an Instagram account that boasts over a quarter of a million followers, showcasing his lively nature and role as a child model.
They still get hate mail, though, despite all the love and support he gets online. Bonnie stated she received a lot of negative comments after discussing the family’s search for a school that will welcome Farouk and his hair on the well-known U.K. TV morning show “This Morning.”
“This is mental health week, so I’m surprised to be receiving lots of negative comments about Farouk’s hair,” Bonnie said in May of last year.
“Farouk refuses to cut his hair to appease people; it is a God-given feature of him, and he does not keep it long at my request.”
Bonnie argues that the clothing regulations for boys and girls in schools are outdated and often discriminatory because many schools prohibit braids and dreadlocks.
The mother vows that she will never give up on gaining acceptance for Farouk, his hair, and all the other children who encounter discrimination because they want to display their cultural heritage and identity.
In 2022, it will not be acceptable for people in charge of our children’s education to turn away a student because of the color of their hair. Farouk’s hair is an essential component of who he is. These rules should be prohibited.
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