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DES MOINES, Iowa -- Imagine going through life never being able to give those you love a hug and always depending on others for simple everyday tasks.
For one Des Moines boy, it's a daily struggle, but a new family and a new life could mean new hope.
Ten-year-old Aaron Flatt lives with the fact he has no shoulders, arms or elbows.
He and his younger sister, Brittany, have what is known as Holt-Oram Syndrome, or heart and hand syndrome. It's a hereditary disorder that results in deformities and heart problems.
But starting this month, a lot of guardian angels are trying to get arms for Aaron.
"Aaron needs help with the shower. He needs help going to the bathroom. He needs help putting his shoes on, his pants and the zippers and if they're ties or whatever," said his aunt, Kristie Hynes.
It hasn't slowed him down.
"I think that Aaron is an amazing young man. He is not afraid to try anything. And he's also not afraid to let you know if he needs help or doesn't need help," said Dianna Anderson of Howe Elementary.
Sometimes children can be cruel.
"They call me short arms, small arms. 'Did your arms get cut off and get small arms?' I try telling them that's not what happened. I just ignore them, and I just walk away," Flatt said.
He's overcome obstacles.
"I can eat. I can write. I can type on a computer. I can play with my toys, and I can ride a bike," he said. "I steer with my chin, but I can still see where I'm going."
Brittany also has birth defects.
"My sister, she's nice. She's very beautiful and she's nice and she has four fingers without no thumbs and she has a pacemaker," Aaron said.
This isn't all to Aaron's story. After a troubled, abusive homelife led to the termination of parental rights, Aaron and Brittany, along with older brother, Jeremy, who doesn't have the syndrome, lived in foster care before moving in with aunt and uncle Gordon Hynes in August.
They are adopting the three children on May 9.
"I'm trying to give them another chance at life -- another start, a better start," Kristie Hynes said.
It was Kristie Hynes who wondered what more could be done for Aaron, and that brought them to Chladek Orthodic and Prosthetic Associates. Because he was so impressed with Aaron, Jonas Chladek said he started doing exhaustive research and contacting experts across the country to develop a plan.
"This is probably the most complex condition that I've had to deal with, and that's why we always bring in other people to offer information that we can build off of," Chladek said.
The plan is to eventually fit Aaron with the latest technology offered by Otto Bock, a company in Minnesota. The prosthetic is a complete upper body device giving him arms, elbows, wrists and hands.
"Basically, it sets electrodes up against the muscles and by firing different muscles, he'll be able to lift and raise the elbows, rotate the wrists, open and close the hands. And because of the level of involvement and Aaron doesn't have shoulder joints, it will actually have replacement shoulder joints that will allow him to position those arms in a way that they are actually functional for him," Chladek said.
The device does not come cheap.
"Just the componentry alone is well over $100,000 for the two prosthesis he'll be receiving," Chladek said.
Jonas said that over Aaron's lifetime it could well cost upwards of $1 million for treatment, replacement and repairs.
He now is awaiting word from Medicaid as to how much it would cover. Chladek said it is helping financially, and the family also is considering other funding sources."I hope I can do a lot more things that I couldn't do before, like get my pants down without nobody helping me and getting dressed by myself with buttons and zippers and belts," Aaron said.
"I hear all the time, I can't wait until I have my arms, so I can do this and I can't wait until I have my arms so I can do that. He wants a shot at living, like everybody else," Gordon Hynes said.
Now it's a waiting game to see what happens next.
If and when the money is available, it could be months before Aaron is fitted with the prosthesis and then comes the challenge of learning how to use them.
Kristie Hynes said they are trying to stay as realistic as they can about the possibility that he won't be able to get the prosthetic.
She said she always thinks the worst and hopes for the best, but that Chladek is determined to see this happen. Even before this story aired, the Shriners saw the preview and have contacted the family.
The Shriners said they want to meet Aaron next week.Donation Information
Donations for the Arms For Aaron Benefit Fund can be made at any Wells Fargo bank location in Iowa.
so contact one of there banks in iowa to donate please.-1-800-TO-WELLS (1-800-869-3557). ask how to donate
