March 10, 2000

Can you imagine living with muscles and joints that act like rubber bands? It's a rare, terminal disease called Larson's Syndrome.

A little boy from Emmet, Idaho, suffers from it. He's now at Primary Children's Medical Center. Carole Mikita tells Anthony Hardman's story.

Anthony Hardman get around on a power wheelchair. It's his first day back at school, just to visit. He's coming to Salt Lake City for surgery on Monday.

"Well, we're going to be thinking about you, okay? Okay."

Anthony has a very rare, terminal disease called Larson's Syndrome, which means his joints and muscle tissue are like loose rubber bands.

Julie Hardman/Anthony's Mother: "His head was falling off. Two years ago they fused his head to his shoulders, he used to hold it on like this all the time."

His doctor, Dennis Dahl, has never seen anything like it.

Dr. Dennis Dahl/Family Practitioner: "He is attached by metal rods and screws and bolts from his head to his pelvis and as he grows the metal can't grow and he has to have it replaced."

"These are the screws that these are hooked into and he's broke those."

That's what surgeons will try to repair, but Anthony's chances of making it through another surgery are slim.

Anthony Hardman/Joint Disease Sufferer: "I kind of want to die and go see my dad."

His dad passed away three years ago of a heart attack, and talk of more death is hard for his mother to handle.

Julie Hardman: "My other kids want new Nikes. We save the money, we get the Nikes. I got one that wants to die. I just kind of have to be happy for him. I'd just....keep him, but I also have watched what he goes through and I understand why he wouldn't necessarily want to do it anymore."

Anthony's aid at school has worked with special needs children for 13 years now, but no one has touched her the way Anthony has.

Juanita Johnston/Anthony's Aid: "He touches everybody. Everybody that knows him, I feel is better. And the kids, it's taught them, you know, to be thankful for every day that they have."

Anthony will undergo surgery at Primary Children's Medical Center Monday morning. We'll continue to follow his status.