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.
25 Years Later They Laugh At Critics Who Said Marriage Wouldn’t Last
There are many people who get married despite the fact that critics may doubt their ability to stay married for the long term. This often happens when we get married quickly or perhaps we are young and people don’t think we are yet responsible enough for the bond.
In 1995, there was a young couple who also were doubted but they ended up getting married and they stayed married for 25 years. They also were the first couple with Down syndrome in the UK to become husband and wife.
These days, we hear about people who have Down syndrome getting married on a regular basis. At that time, however, it was unheard of and it was the first time in the world that a couple with Down syndrome said I do.
Just like any other disability, however, those with Down syndrome have the ability to beat the odds, and certainly, that is what Tommy and Maryanne Pilling did. In fact, they are an inspiration to many who wonder if they have what it takes.
Maryanne was born in 1971. Her mother, Linda Martin, provided her with a loving atmosphere at home and she also had a sister who loved her as well. There were still times, however, when she struggled in life and she was even rejected by her father.
Since she was raised in a loving household, however, she grew up to be a very loving woman. It was easy to see in her lively personality.
Tommy was born in 1958 and was an only child. When he was 12 years old, he became an orphan and he grew up in a care home in Essex. He did have delayed development because of a lack of a support system, and he didn’t care much for his physical appearance.
When the two of them met in 1990, they were working in a kitchen in a training home for disabled individuals. He was 32 and she was 19 at the time.
It was easy to see how Maryanne felt about Tommy because she would absolutely light up when she spoke about him. They shared a number of common interests, such as music, cooking, movies, and doing craftwork.
Tommy also loved Elvis Pressley and the two of them would dance together on a regular basis. He would also let her know how much he loved her, and eventually, the family got accustomed to having him around.
18 months after they started dating, he proposed to her and asked her mother for permission to marry her daughter. The mother didn’t hesitate, she gave her blessings right away.
Other people, however, were not quite so positive about the idea of the two of them getting married. Some said that she wasn’t ready for it and some even asked about their sex life.
Despite the fact that they were criticized openly, they got married in 1995. 250 people came to the wedding, which was a fairytale for them.
They lived together with her family for seven years before moving into their own apartment next door. Her sister also moved along with them.
They have a very strong bond because he listens carefully when she speaks. There is never any type of hidden agenda and they love each other with their whole hearts.
Unfortunately, Tommy was hospitalized in 2020 after he was diagnosed with Alzheimer’s and then got COVID. Due to his declining health, he passed away. That was on January 1, 2021.
When the news was broken to her, she seemed to understand but still was a little confused about the situation. We are just glad that they had almost 30 years together, and they loved each other till the end.
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