CLARKSVILLE - Michelle and David Lucas were awakened the morning of June 10 by pounding and screaming. Their neighbors were at the front door, telling them to get up and get out because floodwaters had entered their backyard. They had just enough time to get their two sons, Keith and Daniel, up and dressed, grab a diaper bag and go.

That bag was virtually the only thing they were able to save from the flood that claimed all their possessions and their newly remodeled home.

"We lost all the furniture, and most of our clothes and other possessions are gone," Michelle Lucas said.

The Lucases' story echoes those of many families in the wake of the record flooding, but their story is unique. Their two sons both have a rare genetic disorder known as Lesch-Nyhan syndrome. The boys use wheelchairs and are unable to care for themselves. The disruption in their day-to-day lives has been particularly hard on Keith, 16, and Daniel, 12.

"The boys got so stressed from the flooding and the disrupted schedule that they dehydrated themselves," Lucas said. "Their doctor recommended we put them in a home until we can find temporary housing, but I was like, 'There is no way.' I know they just want to give us a chance to relax, but that would be too damaging for them to break their routine even more."

Dr. William Nyhan, professor of pediatrics at the University of California-San Diego School of Medicine, who along with medical student Michael Lesch, first characterized the disease in 1964.

"The enormity of having two kids in the same family with Lesch-Nyhan is a hardship by itself," Nyhan said in a phone interview. "We all have this sort of problem (adjusting to an upset in routine), but the trouble with Lesch-Nyhan is that it tends to be magnified and the behaviors tend to get worse when the individual is in a situation they feel is threatening."

Nyhan said it would be a serious mistake to put the boys in a home, though he acknowledged he has never met Keith and Daniel. He has spoken with Michelle many times over the years, however.

Lesch-Nyhan syndrome stems from an enzyme deficiency and is characterized by a buildup of uric acid in bodily fluids that leads to symptoms such as severe gout, poor muscle control, moderate retardation and self-mutilating behaviors such as finger and lip biting.

There is a one in four chance that other siblings will have LNS. The Lucases found out Michelle was pregnant with Daniel two weeks after Keith's diagnosis.

Michelle Lucas said the boys need constant care. They must be dressed, fed and changed and are often restrained to prevent them from injuring themselves involuntarily. People with LNS don't want to hurt themselves; they know what they're doing is wrong, but they can't help themselves.

"They will try and gouge their eyes or scratch themselves," Lucas said. "Keith fell out of bed once and rubbed his face raw on the carpet before we could get to him. These kids have a great sense of humor and they are really fun to be around, but they have these behaviors that are difficult to deal with and to explain."

She added that Keith has a host of problems besides the LNS. He has a condition the doctors call malignant hyperthermia, a condition in which he can make himself run a fever as high as 107 degrees, which has been documented at the University of Iowa Hospitals and Clinics.

Their bodies' excess uric acid causes many kidney and renal problems. Both Keith and Daniel have had four major kidney surgeries since 2002.

Because of the unpredictability of their disorder, Michelle and David are uncomfortable letting others care for their sons.

"The kids' health concerns are so high that you are always worrying about something happening to them," Michelle Lucas said. "One day everything is fine, and the next we're rushing off to Iowa City. You can restrain them, but they still find ways to hurt themselves."

It doesn't look like the Lucas family will be returning to a sense of normalcy any time soon. They stayed with Michelle's brother in Waverly right after the flooding and then moved to a temporary rental house. Soon after, the family received notice that the home had been sold and they had 30 days to vacate.

The Federal Emergency Management Agency located a trailer for them to live in temporarily, and the city of Clarksville donated the land to set it on. However, the family had only been in the trailer two days when they were told that the FEMA trailers had mold in them and they needed to evacuate. That was last Saturday.

The plan was for the family to stay in a hotel until a new trailer was found, but the hotel was only booked for four days even though FEMA thought it was booked for two weeks. Space is hard to come by because the family needs adjoining rooms due to the boys' situation, and nearly everything in the area is full.

The only other option is Michelle's sister in Ohio. The family headed that way Thursday, with plans to come back in a few weeks after things settle down.

Michelle said she felt FEMA was dealing with the situation well and doing all it could to help out. The agency has paid for the hotel and is storing what few belongings they have left.

Michelle and David both stressed they are uncomfortable with the attention they have received since the flooding.

"We are not the only ones in this situation. We just have the boys that make our situation different," David Lucas said. "It's not any worse or any bigger than anyone else's troubles."

Kurt Miller is a friend of the Lucas family. Miller's 5-year old son, Kole, has the same disorder. Miller said he knows from first-hand experience how difficult it is to rear a child with LNS, even when everything is going as smoothly as possible.

"When things get away from the routine, stress levels raise and the behaviors associated with LNS increase dramatically," Miller said. "The boys (Keith and Daniel) are having a very tough go of it. Their whole world has been turned upside down."

David said he worked a little bit at a time to make their home more accessible for Keith and Daniel.

He took out walls to give them more space and enlarged all the doorways so their wheelchairs would fit. He even reduced the size of the kitchen so the bathroom could be enlarged to make it easier to bathe the boys.

"I spent a lot of years working on the house," David said. "I only had wood trim in three rooms to finish and some siding on the back of the house to put on when the flood came."

The appraiser, who came after the flooding, said the house is uninhabitable and only worth the land it sits on.

"We had 3 feet of water on the first floor," David said. "It's a limestone foundation, so water damage makes it about worthless."

Miller heard about the family's troubles with the flooding and decided to do what he could to help. He has set up a benefit account in their name at Veridian Credit Union.

"David and Michelle have given their whole lives to giving Keith and Daniel the best lives that they can have as long as they're with us," Miller said. "I've told them on more than one occasion that I think they are heroes, and now they need a hero."

Miller said the Lucases reluctantly agreed to sign papers authorizing the account, and by the time they got in to Veridian to do the paperwork, people already had begun depositing money.

Dr. Nyhan was the first person to donate.

"We're all in the same boat," Michelle said. We are all lost in our own worlds, and we don't want anyone to feel sorry for us, because it's not just us. These little towns got left behind and it's sad. We hate to be negative because everyone around us is going through the same thing, and people are trying to help."

Those interested in donating to the Lucas fund may call Veridian Credit Union at (800) 235-3228 or visit a branch in person. Donors are asked to make contributions in the name of David and Michelle Lucas.

Contact Samantha Donisi at newsroom@wcfcourier.com.