Reprinted from The Sun-Sentinel

Parents find strength in caring for Payton

Posted January 26 2003

After waiting two months for the blood-test results, Debbie and Rob Freeman finally got the call from the neurologist while they were in the car.

"I'm sorry, but it's positive for SMA," he said over the cell phone. And that was it.

At the time, Payton Freeman was 4 months old. The doctors gave him no chance. His muscles would grow weaker, they said. He would lose the ability to swallow or turn his head or even smile. He would never sit up, crawl, walk or talk.

When the end came, and it would likely come soon, he would just stop breathing or suffocate on his own secretions.

"Look at him," said another neurologist whom Debbie and Rob consulted for a second opinion. "He's so weak. I give him three months."

Look at him. Like, "he is so pathetic." That's the way Rob and Debbie heard it. They were angry. They weren't talking about their 90-year-old grandfather here.

This was their baby.

Debbie and Rob had grown up together in Margate. Debbie was friends with Rob's sister. She'd known Rob since the fourth grade. They hadn't planned on a child just yet, but they'd welcomed Debbie's surprise pregnancy.

Their dreams, like a million other parents' dreams. Crushed.

Maybe it was their own stubbornness. Debbie and Rob will tell you they are tough, mentally tough, not people to trifle with. Maybe it was the manner of the doctors, so matter-of-fact. Some would say stone-cold. The way the one dismissed their son so quickly, in between bites of his lunch.

Whatever it was, it made Debbie and Rob stronger.

Even if it meant postponing Debbie's career. With help from her family, Debbie, 32, still works as an assistant manager at Outback Steakhouse. Rob, 35, runs a T-shirt business.

Even if it meant the pain of watching other children run and jump and play, while Payton is on the sidelines.

"Sometimes, I want to take my kid to school," Debbie says. "I want to take him to McDonald's. I want to take him to Disney World. And not in a wheelchair. And I have to put it out of my head. Because those were not the cards we were dealt.

"It's not something that we felt we had a choice in. But if there is something we know we can do for him, then we have to do it. It would have been more selfish of me to just say, `I can't do this. I won't do it.' And just let him go."

Within weeks of the diagnosis, the disease began to reveal itself. At 4 months, Payton was starting to aspirate. Debbie had to stop breast-feeding. At 5 months, he couldn't swallow. Doctors surgically inserted a feeding tube.

At the hospital, an intensive-care doctor hunted Debbie down with a "do not resuscitate" form. Should Payton stop breathing, doctors would not revive him. He asked her to sign. She refused. He tried to talk her into it. She dug in her heels.

Finally, she made Rob sit down with the doctor and set him straight. "We're not signing this form. Not now, not ever."

Payton was so weak they knew it wouldn't take much. But that's not what they wanted. They wanted to take him home. No matter what happened, they weren't going to let him die at that hospital.

"The baby is brand new and you picture this life of growing up and playing baseball and the whole thing," Rob says. "And this guy is telling me, `just let him go. It will all be over with really quick. Just let him go. We'll put you in another room and make him comfortable. And when he's gone, he's gone.'"

Debbie and Rob turned elsewhere for help. On the Internet, they found other parents with SMA children. Some parents take an equally harsh and opposite view of the doctors. Wait a minute, they told Debbie and Rob. Don't listen to the doctors.

"They basically told us, `Just because your child is sick doesn't mean you take him home and let him suffocate,'" Debbie says.

Debbie and Ron were skeptical at first, but they listened to what other parents had to say. They figured some of them were a little wacky. Because once you start living with SMA every day, "you get a little wacky.

"You can't help it," Debbie says. "You're dealing with emotional trauma and grief every day. You've got nurses in your house every day. You're dealing with your child who stops breathing and you've got to do CPR to revive him. In the end, what happens is you get kind of neurotic with all these people telling you different things."

By 7 months, Payton was struggling to breathe at night.

Debbie and Rob had already purchased a Bi-Pap, which is worn as a nasal mask with a cap that fits over the head and feeds oxygen through a small hose.

"It wasn't even like, `Should we use the Bi-Pap? Should we prolong this?' It was never like that," Debbie says. " It was, `He needs air.'"

Payton started wearing the Bi-Pap at night to help him fall asleep. Gradually, he began wearing it all night. With the Bi-Pap and a rotation of nurses, Payton and his parents could sleep through the night.

But the disease continued its course. At 11 months, Payton lost the ability to smile. That seemed especially cruel to Debbie. Already, her baby couldn't swallow or move from the neck down. And now, he couldn't smile?

"SMA is vicious," she wrote to other parents on a Web site.

For Payton's first birthday, Rob and Debbie took him to Universal Studios in Orlando. A milestone the doctors thought he'd never reach.

Now 21/2, Payton continues to outlive the expectations. His eyes are bright blue, like Debbie's. He expresses himself through his eyes and his facial movements.

He works with a physical, speech and occupational therapist as well as a teacher who comes to their Margate townhouse. He likes to watch children's videos with the volume turned up loud. Lilo & Stitch. Shrek. And his favorite, Toy Story.

Last month, his family took him to Disney World.

He likes playing with his dad, deliberately setting off the beepers on his monitors so he can watch everyone come running.

"If he's watched a video 50 times, the 51st time, he may not want to watch anymore," Rob says. "So he lets you know. He'll look at you, he'll pick the one with his eyes. If you put the wrong one in, he'll cry.

"I treat him like most dads would treat their sons. I know that he's handicapped, but I still treat him a like a little boy. He wants to play."

"Payton is somebody now," Debbie says. "He has a personality. He has a purpose." (Through a non-profit organization, he helps raise money for SMA research.)

Debbie and Rob believe Payton is happy, that he doesn't know any different. He can't tell them so.

"Grandma will be here in a little while. Grandpa stops by every day. Everybody loves Payton. There's never pain or suffering," she says.

Debbie and Rob get excited by the small things. Payton waves bye. He moves his legs back and forth. He moves his wrist a little to hold his Beanie Babies.

They don't know what happens next, or for how long. They appreciate every day with Payton. They see other people yelling at their kids, caught up in the stress, the day-to-day routine. Unfettered by the "emotional life and death realities" that they live with every day.

And they say they are better off because of it. Better off because of Payton.

"We were people who lived in the dark like most everybody else," Debbie says. "Now we're better people, better parents, better children. We're better everything."

Kathleen Kernicky can be reached at 954-356-4725 or

Copyright 2003, South Florida Sun-Sentinel

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