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.

Patrick Hardison received a new face after third-degree burns, this is him today

The life story of Patrick Hardison from Mississippi is nothing less than a mind-blowing one. This man is the first American who has received a face transplant back in 2015 after his face and neck were left completely disfigured during a house fire.

Patrick’s life was a great one up until the day the tragedy struck in 2001.

He worked as a volunteer firefighter earlier in his life, so when he got called to help with a house fire, he didn’t hesitate. Sadly, once he entered the burning place, it collapsed on top of him and trapped him. He couldn’t move and his torso and face were severely burnt.

“[My mask] was melting to my face,” Patrick recalled. “My hose [was] already melted.”

“For somebody who does what we do for a living, I’ve never seen anybody burned that bad that was still alive,” friend and first responder Jimmy Neal told CBS News of seeing Patrick after the accident.

Youtube/ABC News

Patrick suffered third degree burns on his face and scalp. He also sustained burns to his head, neck, and upper torso. The fire also claimed his ears, lips, most of his nose, and even most of his eyelid tissue.

“I didn’t actually see myself until probably November. I got injured in September,” Patrick told Fox News. “They had cut a little pinhole in one of my eyelids because they had everything covered, skin graft. I looked in the mirror and all I could do, I said, ‘this is it? I can’t do this,’” he recalled.

Over the years, this man was forced to undergo over 70 surgeries, as well as other procedures. He couldn’t close his eyes and doctors were able to put together flaps of skin to protect his vision, but he was still facing the risk of going blind.

Youtube/NYU Langone Health

Patrick couldn’t eat without feeling excruciating pain. He just couldn’t get used to this life because he couldn’t look at himself in the mirror. Wherever he went, everyone starred at him, and he could barely stand being around people, even his children.

In order to hide and protect himself, Patrick wore sunglasses and a baseball cap all the time. He also had ear prosthetic.

“I had kids. It was just a tough time. I never got a day off from the injury. When you walk out in public, it was daily. And, you know, it’s just so — there’s no way to explain everything,” he told Yahoo! Sports.

“You go to the ball field, you have to prepare yourself for the kid that goes running off screaming.”

Youtube/NYU Langone Health

Years went by and Patrick lost hope of ever having a normal life. But then, French woman named Isabelle Dinoire received a partial face transplant after her face was severely disfigured by her pet dog. This procedure was revolutionary. It was the first ever of that kind. Surely, it gave a glimpse of hope to Patrick who at that point was truly struggling.

Patrick met doctor Eduardo D. Rodriguez from the NYU Langone Medical Center in New York who told him he would do the transplant surgery if they find a matching donor. It wasn’t easy, but one day, out of the blue, a donor appeared. LiveOnNY, a nonprofit that coordinates organ donations in the New York area, had found a match. The face Patrick was about to get belonged to 26-year-old David Rodebaugh who had sustained a massive head injury in a bike accident and had been declared brain dead.

Youtube/Inside Edition

This young man’s mother, Nancy Millar, decided to donate her son’s organs, including his face. “I said, ‘You better save his face. He has the face of a porcelain doll.’ And he’s a donor — we had talked about it,” Millar told People.

The thought of someone receiving her son’s face meant that David would continue to live on through the people whose lives he was about to save, including Patrick’s.

“When I met Patrick, I saw this strength, this strong, manly, burly kind of energy in him — that David had,” Nancy recalled.

“David wanted to be a firefighter, an I knew if this guy was a firefighter — he was willing to walk into a fire to save people and risk his own life — then he had the strength that David had.”

Youtube/Inside Edition – David

Finally, the day of the transplant surgery had arrived. The procedure lasted for 26 long hours and was performed by a team of 100 professionals.

The risk was enormous and Patrick was given a 50/50 percent chance of survival. Luckily, it was a huge success. Patrick received a new face, scalp, ears, and ear canals. He also received eyelids which allowed him to blink naturally and save his vision.

“Everything in life has a risk,” Patrick told Time Magazine.

“When it’s your time to go, you’ll go—whether you’re walking down the street and get hit by a car or you’re lying on the operating table.”

Youtube/NYU Langone Health

After he recovered from the swelling and he learned how to talk and swallow again, Patrick met his donor’s mother. Nancy only had one request, to kiss Patrick on the forehead.

“I said, ‘Can I kiss your forehead?’” Nancy said. “That’s the one thing I wanted to do because every night before David went to bed when he was little, I kissed his forehead.”

“I’ve been waiting a year to meet her. I’m just very grateful,” Patrick added. “Without her, it wouldn’t have been possible. It’s like she’s family. We connected that easily.”

Twitter/PatrickHardison

Ever since the surgery, Patrick is taking anti-rejection drugs that prevent his immune system from rejecting the face, but he’s thriving. He didn’t only receive a new face but a new life too.

Today, he is divorced and is working on a book which he hopes would serve as an inspiration to anyone who believes there is no way out from the situation they have found themselves in. “Because I want to show the world that you can have hope. I wouldn’t want people that were like me years ago to think that’s it, I have to live like this. You don’t. You can accomplish anything,” Patrick says.

His survival and his recovery are dubbed miraculous. Thanks to Nancy, Dr. Rodriguez and his team, and Patrick’s strong will, today, he is a happy man.

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