I Just Know My Kid:

Kari works in accounting, not medicine. One day she had to sit down at her computer and work out what was wrong with her son. She was right.

"I don't know neurology or autoimmune disorders or anything like that. I just know my kid. And I think as a mom, that's what we know. We know our own kids, right?"

That's what Kari Murphy Garcia told the neurologist who diagnosed her son, right after she asked if Kari wanted a job.

She works in accounting and internal audit consulting. "About as far from healthcare as you can get."

Stop being gross

The first sign was that he couldn't smile. Late 2019, Alessandro was eight, and his face did something odd in photographs. They chalked it up to being eight.

Then he started mashing his food instead of chewing it, and his sister told him to stop being gross at the table. Kari took him to an orthodontist. His bite was fine.

"Looking back now, we look at photographs from that time and we're like, gosh, how did we not see this?"

He'd never been sick. The next summer it got hot. He fell at baseball practice and couldn't get back up, and weeks later he started falling off his bike. His dad was coaching. "I thought he was jacking around, but he fell down and then couldn't get back up."

It was the first summer of COVID. "We don't just want to run into the doctor for something like this."

He's not fine

By August she was watching him pull himself up the stairs on the railing. He couldn't get into his own bed. They had to boost him in.

The pediatrician sent him to the children's hospital in Fort Worth that day. The MRI was clear of a brain tumor, and neurology let him go.

He kept getting worse, so she took him to Children's Health in Dallas instead. He looked fine to them, and they sent her home.

Myasthenia gravis comes and goes. Catch a kid on a cool morning and there's nothing to see.

So Kari sat down at the computer and researched until she had an answer: myasthenia gravis. Her two friends who are physician assistants told her she was wrong.

"They were like, Kari, that's really rare. And especially in children. It would be like one in a million. There's just no way it's that."

Not long after, Alessandro fell out of a play structure at a friend's house. He got in the car and couldn't speak.

They packed a bag and went back to the ER.

"They were like, oh, have you been Googling? And I was like, yes, I have."

She tucked in and stayed until a neurologist came down. He got on the floor with Alessandro and said let's race and see who could stand up first.

Alessandro couldn't.

"He said, I think you've got something here, mom."

Thirty milligrams of Mestinon later, "he was running flights of stairs in the hospital."

September 2020. He was nine. Kari had been right.

Get this out

IVIG started that week, and he came back fast, up to about 80% of himself.

Then Kari researched again and found that moving early on a thymectomy gave you a better shot at remission. Her son's neurologist was one of the leading experts in the country on a juvenile myasthenia gravis panel. Kari still had to push her.

"I was like, I just, my gut tells me, get this out."

The doctor listened. They flew to Children's Hospital of Philadelphia for the surgery. The thymus came out in May 2021, and the thymus was abnormal even though the imaging had shown nothing.

Deciding for somebody else

Kari isn't a medical professional, and she says so often.

"When your kid gets sick as a mom, I just feel like you somehow become an expert on your own kid."

Learning it wasn't the hard part. "It took getting them to listen, and it was really frustrating as a parent for sure."

And once they listened, every call was hers and her husband’s, Alessandro’s dad.

"It's not like just making decisions about your own body. It's making decisions about somebody else's. Should we put him on this medicine and then maybe he gets cancer, and we’re making that decision for him? Or should we push to get this surgery, and then what if he has complications from it? We pushed for this. And so it's that extra pressure."

A better way

The rule in their house is that the answer is never no.

"We try not to be like, oh, you can't do that because you have myasthenia gravis. We just try to be like, oh, you can totally do that, but let's figure out a better way."

His dad got to know the man who runs the rec soccer league, so every game kicks off at eight in the morning, before the heat. The water park happens at ten, when it opens.

The only thing he's given up is baseball, which he loved. But he replaced that with karate, which his neurologist said is great for myasthenia gravis.

Nine months

He came off treatment entirely in August 2024 and got through this summer better than the one before. He's too healthy now for the clinical trials his neurologist runs.

At his last appointment the doctor said she didn't need to see him for nine months. She'd never said that before.

Kari puts it down to moving early. She spends a lot of time now on a pediatric myasthenia gravis group, answering parents who are where she was.

"I remember how helpless it felt and how I didn't know what to do."

He did his research

Back during IVIG, when Ale’s veins kept blowing and they'd have to start over, Kari looked across one day and he was smiling through it. She asked him what he was doing.

He said he'd been researching. There's evidence that if you smile while something hurts, it hurts less.

"I was like, oh my God, you're researching that? It almost broke my heart, but made me so proud at the same time."

The first sign that anything was wrong was that he couldn't smile. Now he’s doing it on purpose.