Submitted photo From left Laurel Seely and her son John.

“Each day is a challenge.”

As Laurel Seely said that phrase, you could hear the positivity surrounding it.

Each day, she continues to keep an upbeat attitude while having to provide care for her son, John.

John, 14, was diagnosed with cerebral adrenoleukodystrophy (CALD), a rare and devastating genetic disorder affecting the brain and adrenal glands. The disease leads to the loss of vision, hearing, speech, mobility and independence.

“Each day that he opens his eyes is a gift. I get to spend another day with him. I tell him every night, ‘I’m proud of you John, and I love you.'” Laurel said.

Her upbeat attitude comes from being a woman of faith.

“I truly rely on the Lord’s strength to get me through, I’m a woman of faith, and that is what I rely on completely,” Laurel added.

Laurel, a single mom, said her son already has begun experiencing early-onset dementia due to significant brain damage and now requires round-the-clock care from his family.

Recently, John made a remark, and dropped her to her knees, and made her cry, Laurel said.

“He said ‘mom, I know most of my brain is rotting away, but I want to make the best of what’s left with it,'” she said.

Laurel said when John was three he was diagnosed with adrenoleukodystrophy which meant his adrenal gland had shut down and stopped working. Laurel added that doctors had told her when he was diagnosed, that it can turn into a cerebral issue if the body begins to attack itself.

“They said it’s exceptionally rare,” Laurel said. “It probably won’t happen to John, and if by some slight chance it would happen, it would manifest in his 40s or 50s.”

So, for many years, Laurel added, her son has had an MRI of his brain to make sure nothing cerebral was happening.

“He always had a clean bill of health with that (the MRI),” Laurel added.

Then it happened.

While attending Chautauqua Christian Academy in April 2025, he went to lunch, and disappeared for a couple of class periods.

“They found him in the bathroom,” Laurel said. “He had collapsed, and his head was violently jerking, and he was almost displaying seizure-like activity.”

After learning about the incident, Laurel had him rushed out to Oishei Children’s Hospital, now known as Golisano Children’s Hospital, in Buffalo, and had an emergency MRI performed.

“That’s when they found the white matter in his frontal lobes,” Laurel said.

She was referred to The Children’s Hospital of Philadelphia.

“That’s where I received a grim diagnosis,” Laurel said. “The team of specialists gathered around me, and my heart sank. I knew something was very wrong, and they said, ‘Your son is dying, Laurel. And he’s, he’s got what we dreaded.'”

The only hope they offered her was what they said was a “risky procedure in Boston, where John stood a one-in-three chance of surviving. Laurel said the procedure would have included a brain surgery with a six-month recovery in Boston with no guarantee he would come back home with her.

“And if he had pulled through, he would have had to undergone massive amounts of chemo(therapy) and horrible, horrible medications that would have made him a shell of a human being,” Laurel said.

And she said, if she would have chosen that route for her son, he would be on those medications for the rest of his life.

So Laurel decided to bring him home. She wanted John to be around his siblings and family.

“We just have to kind of ride out the storm, and it’s a very unpredictable, fast-moving disease,” Laurel said.

Laurel noted that John really excelled in baseball, baseball, playing the drums, and playing guitar.

“Each day is a challenge because the (brain) damage is so significant that he has early-onset dementia,” Laurel said. “John is at great risk for severe, severe seizures. He can wake up just suddenly be blind. I mean, that’s how scary it is. He can just not be able to see or hear. It’s a very devastating disease.”

To help offset medical expenses, and support John’s quality of life, the Chautauqua Dwyer group, REALLIFE church, and friends and family of Laurel are holding a spaghetti dinner benefit on June 28 from 12 to 4 p.m. at the Celoron Legion Post 777, 26 Jackson Ave.

Patricia Portale, and Haleena Walter are organizing the benefit and are asking for support through donations.

The donations may include merchandise for raffles or auctions, food supplies for the dinner, gift certificates for products or services, monetary contributions.

He will turn 15 in July.

“He literally doesn’t remember that he ever played baseball. I’ve shown him videos, and he said, ‘Mom, is that me? And I said, “Yes, that’s you.’ He doesn’t remember how to play any of his instruments. He was a drummer and a guitarist, and he was phenomenal, and I’m sad now, because I used to tell them, ‘John, you’re being so loud.’ I look in his room and his drumsticks are laying, and he has a collection of guitars, and it’s so quiet,” Laurel said.

For more information on donations, contact Portale at (716) 519-0317 or Walter at (716) 489-4657.

” I miss him playing his music,” Laurel said.