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Imagine having a healthy young son and then seeing all he learned so far in his life come undone.

Marshalltown native Tracy VanHoutan does not have to imagine it, he is living it. Tracy VanHoutan and his wife Jen have a 5-year-old son, Noah, who has Batten Disease.

The family lives in Downers Grove, Ill. and have witnessed Noah have seizures, lose his ability to walk or feed himself and have heard his vocabulary shrink by the day.

After dealing with seeing their son's condition deteriorate they have now been told Noah's 3 year-old sister Laine has the same genetic disease.

"We were struggling before and this was a shock to us," said Tracy VanHoutan, who was a 1990 graduate of Marshalltown High School.

Most children die from the disease between the ages of 8 and 12, which is why the VanHoutan family is stepping up the search to find a cure.

Tracy VanHoutan even travelled to a conference on Batten Disease held in Germany to get more answers.

"Every day it's researching trying to look if there is something. We are going down swinging," he said. "No one has ever beat this but eventually someone has to."

It was a struggle even getting the diagnosis of Batten for Noah. Several doctors and medical experts could not pinpoint the case. Noah's case is one of about 200 in the whole world.

Laine's case is baffling for the family as she has not shown the signs Noah showed at the same age.

The VanHoutans are not alone in the fight for the cure of the disease. Friends have rallied around the family including Brett Perry of Marshalltown.

Perry is a fellow 1990 MHS graduate and will be running a half-marathon in Des Moines Oct. 18 and collecting money for the VanHoutans and Batten research.

"I've been lifelong friends with Tracy," Perry said. "Being a parent myself I can't even start to imagine what they are going through. It's a tough story."

Tracy's mother, Mandy Abernathy, lives in Marshalltown and has also found the situation tough to deal with.

"Watching your kid go through something like this it's very difficult," she said. "The second diagnosis just knocks you out."

Abernathy is shoring up plans to hold a big garage sale fundraiser for the cause sometime in October.

Tracy VanHoutan said this past week one of his biggest fears would be the day Noah could no longer say "daddy." That day Tracy fears is nearing, he said.

Additional fundraising efforts for both the family and the cure can be found at www.noahshope.com. Perry said a link to fundraising for his marathon is also expected to be posted on the site soon.

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Contact Andrew Potter at 641-753-6611 or apotter@timesrepublican.com