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.

Man Mocked For Being With 252 LB Woman, Has The Perfect Response To Shut Haters Up

We expose ourselves to criticism when we post details of our lives online for everyone to see.

Since this young couple likes to share images of themselves online, some have responded harshly to them.

But their witty response to the criticism offers a sobering reminder of the importance of sticking to one’s convictions.

The story of Matt and Brittany Montgomery is one of those that occurs frequently but is yet fantastic because of the characters.

After they met and fell in love, the two started a life together right away.

Although the story of the pair may seem familiar, there is one important difference: the male is much bigger than the woman.

Brittany has battled her entire life to feel accepted and included. Her controlling parents did not make her feel protected, and she frequently left their talks feeling empty.

She started to detest her appearance and feel self-conscious as a result.

She experienced two different kinds of guys because she was a plus-size woman: those who were attracted to her curves and those who wanted her to lose weight.

Her bad luck in dating had her thinking about giving up on finding love altogether.

However, fate had different ideas for her! August 2020 saw her meet Matt Montgomery online. Even though their bodies couldn’t be more dissimilar, their spirits were more bonded than ever.

“I was a bit hesitant at first,” Brittany thought to herself. Guys have threatened to break up with me in past relationships if I don’t start dieting or make an effort to lose weight. It did have an impact on my confidence, and I did attempt to change my size by working out at one time.

They knew they were in love with one other, nevertheless. On January 30, 2022, Matt proposed, and the couple started preparing for the future right away.

Although they are very comfortable with each other, they talked about how others may view their relationship.

“People comment on Instagram and suggest that I’m not big enough or man enough for her,” Matt stated in response to a question regarding the remarks on his Instagram photo.”I do notice people staring when we walk down the street,” he continued.

No matter how many others don’t understand it and condemn their relationship, they still just have love for one another.

Matt has had a difficult time interacting with women that are “normal” size in the past.

Matt came to the conclusion that Brittany is, in fact, his soul mate because of the way she makes him feel. He strives to make sure she’s happy since he loves her for who she is.

He recently told her, “You are worthy, you are deserving of infinite love every single day and more,” demonstrating his love for her without holding back. I can tell we were meant to be together by the way you look at me and feel the same way I do about you.

He demonstrates his love for his spouse and the depth of their relationship beyond what is visible by captioning the picture of him and his wife with the offensive remarks people have made on other couples’ images. What a fantastic victory over the doubters!

The two are attempting to standardize interactions between individuals of various sizes. She said, “I wish mixed-weight relationships were more common and more the norm,” expressing her desire for them to be.

The young couple only revealed this month that they expect Lakelyn, their second child, in September 2023. We wish them all the best.

Nothing is set in stone when it comes to finding true love and following your heart.

We should all make an effort to love and embrace one another no matter what.

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