"It's been a long, long journey from the start and things are going good," Caleb Waddell simply explained his complex condition.
"His diagnosis is MPS, Mucopolysaccharidoses. It's Hurler's Syndrome. There's just no cure," said Caleb's mom, Kelly.
And so, for Kelly and Caleb, life goes on...in spite of the nay sayers.
"Before we came to St. Jude, we were told there was absolutely no cure for him," Kelly said. "That I would die at the age of ten. They were wrong. Yea, they were wrong," Caleb retorted.
"They told us he would probably die between the age of five and ten. He would go blind and deaf and he would become mentally retarded. He would lose all of his cognitive abilities," Kelly said.
Caleb was a year old at the time. By the time he was 18 months old, the first effort to stop his disease in its tracks.
"We found out they had been doing bone marrow transplants for a couple of years to help slow the progression and to help save the brain," Kelly said.
This mom knew the bone marrow transplant alone would threaten young Caleb's life.
"They asked if I knew the percentages, the chance of it working or not because after the age of two most places wouldn't even do a transplant because they were too far progressed," said Kelly. "And I said, I know the chances without it. With the transplant we knew there was hope that it would slow it down enough to get a cure one day."
It's a decision that has paid off.
"It stopped the progression in his brain. It continues slowly progressing in his body," Kelly said.
As for Caleb, those issues just aren't on the front burner for him. "Hi world!" Caleb said, as he stared point blank into the video camera.
"I like dolphins. They know how to swim," Caleb said.
Kelly looks at her son and said, "Oh, he does like to swim."
But Kelly's imagination just can't keep up with Caleb's.
"I think I'm a mer-man. I swim fast."
Kelly peacefully puts it in perspective. "You got to laugh through the hard ones." Caleb replied, "and you've got to have joy." Kelly agreed, "You've got to have joy. It's hard to stay sad around him."
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