Mom of Boy with Rare Condition Shares Their Life, People React Differently

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.

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.

Jimmy Carter has become the first U.S. president to turn 100 years old.

Former President Carter and wife Rosalynn are shown on a walk in their hometown of Plains, Georgia. (Matt McClain/Washington Post via Getty Images/File)

Former Democratic President Jimmy Carter turned 100 years old on Tuesday, making him the first U.S. president to live for an entire century.

Carter, the 39th president, has been known for several “firsts.” He was the first U.S. president born in a hospital, the first Naval Academy graduate to become president, and the first president to visit Sub-Saharan Africa officially. Now, he holds the record as the first U.S. president to reach 100.

Carter is currently receiving home hospice care in his hometown of Plains, Georgia, where he has lived since his presidency ended in 1981. He has been in hospice care for nearly two years. Sadly, his wife, Rosalynn, passed away last year at the age of 96.

Former President Carter and wife Rosalynn are shown on a walk in their hometown of Plains, Georgia. (Matt McClain/Washington Post via Getty Images/File)

Jill Stuckey, a family friend of the Carters for over 30 years and the superintendent of the Jimmy Carter National Historic Park, said, “It’s funny, President Carter has done so much and usually succeeds at everything. But the one thing he hasn’t been great at is hospice.” She added, “He just keeps living, and we’re so happy about that. So if he’s not good at something, we’re glad it’s hospice.”

When asked what makes Carter different from other presidents who lived to an old age, Stuckey said it was his “tenacity” — his determination and will to keep going.

Jill Stuckey told Fox News Digital that Jimmy and Rosalynn Carter always wanted to live as long as possible and stay healthy so they could help as many people as they could. She said they ate healthy meals, exercised every day, and worked hard to take care of themselves so they could keep helping others. “That’s what President Carter is showing today — that all those efforts really make a difference.”

The White House also put up a birthday message for Carter on the North Lawn to celebrate his 100th birthday.

The White House is celebrating former President Jimmy Carter turning 100 on Tuesday, Oct. 1, 2024, becoming the first former president to do so. (Griff Jenkins/Fox News)

Jill Stuckey said that celebrations for Carter’s 100th birthday started on Saturday in Plains, when the town held its annual peanut festival. “We celebrate peanut harvest season here in Plains, and it happens around the same time as President Carter’s birthday every year, so we usually celebrate them together,” she said.

A float moves down Main Street during the 26th annual Plains Peanut Festival ahead of former President Carter’s birthday on Oct. 1. (AP Photo/Mike Stewart)

Jill Stuckey also mentioned that on Tuesday, for Carter’s birthday, there will be more events in Plains, including a ceremony at Plains High School where 100 new citizens will take the oath. This is special because both Jimmy and Rosalynn Carter went to that school.

After the ceremony, there will be a flyover to honor former President Carter, organized with help from Secretary of the Navy Carlos Del Toro. Later in the afternoon, Plains will hold a ribbon-cutting ceremony for new statues dedicated to the Bill of Rights and the Constitution.

In celebration of Carter’s birthday, volunteers in St. Paul, Minnesota, came together to build 30 new homes over five days. Country music stars Garth Brooks and Trisha Yearwood were among the participants.

“You’re one of the most influential statesmen in our history,” President Biden said in a video released ahead of Carter’s birthday on Tuesday.

Over the weekend, Grand Ole Opry member and country music legend Charlie McCoy played a special rendition of “Georgia On My Mind” to honor the former president.

Snow covers a statue of former President Carter on March 21, 2023, in Rapid City, S.D. (Mark Makela/Getty Images)

Cathie Skoog, a former member of the White House Communications Agency, said, “I remember the first time I saw him, and I was in awe. That feeling has always stayed with me. You can meet presidents all the time, but the first time is always the most special.” She added, “He didn’t care what people thought. He just did what he believed was right for the country.”

During his time as president, Carter focused on protecting the environment, improving human rights, and making the American education system better. He made big changes, like updating the civil service system, opening up the airline industry to more competition, and creating the Energy and Education departments. He also helped make cars safer by requiring both seat belts and airbags.

Carter’s time as president also had its challenges. There was high inflation, an energy crisis, and failed efforts to free American hostages who were held in Iran. His Secretary of State, Cyrus Vance, eventually resigned because he disagreed with how the administration handled the hostage situation.

During the Iranian Revolution, oil prices in the U.S. went up sharply. In July 1979, President Carter gave a speech where he said Americans were losing confidence in the country because of rising inflation and the energy crisis.

He said, “The signs of this crisis of spirit are everywhere. For the first time, most Americans think the next five years will be worse than the last. Two-thirds of people don’t even vote. Workers are less productive, and Americans are saving less than people in other Western countries.”

Carter added, “We need to face the truth, and then we can change direction. We must believe in each other, believe we can govern ourselves, and have faith in the future. Restoring that faith is our most important job now.”

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