DOWNERS GROVE –  Noah VanHoutan's life lasted only about 12 years, but the news of his death reverberated throughout the Downers Grove community.

Noah died March 26 from Batten disease, a rare neurological disorder that has no cure and is fatal.

Thanks to the work of his namesake charitable foundation, Noah's Hope, other children with Batten disease may have a chance at a better life.

In March 2009, Noah was diagnosed with late infantile neuronal ceroid lipofuscinosis, a form of Batten disease. Five months later, his younger sister, Laine, also was diagnosed with the disease.

Children with Batten disease progressively lose their sight and motor skills and typically die between the ages of 8 to 12.

Noah’s parents, Tracy and Jennifer VanHoutan, said their family had taken several trips together after learning about the diagnosis in order to create family memories.

“You think you have a lifetime to do all these things,” Tracy said. “When you find out you don’t, you try to do a lot.”

Jennifer said it was hard to move on with her life after she first learned of the diagnosis.

“How will we ever enjoy life?” she said she asked herself.

She said meeting parents of other children with Batten disease taught her she may not always enjoy life, but it is OK to be happy again.

One of the ways the VanHoutans have tried to move forward is through their foundation, which raises money to find a cure for the disease.

Even though a cure was not found in time for Noah, that mission will not change.

“At least until we get an improved treatment, we aren’t going anywhere,” Tracy said, adding that an improved treatment may be coming soon.

One of the research groups the foundation helped fund has developed a drug that, through clinical trials, has shown some success in treating the disease.

“In a generalized sense, when children went on this drug, they quit getting worse,” Tracy said. “They may or may not regain some of the abilities they lost, but they stopped declining.”

They are waiting on the Federal Drug Administration to approve the drug, which may take a couple of years.

Noah’s Hope would not have the money to contribute to the research without the support of people who donated to the foundation and participated in fundraisers such as the annual Cupcake Classic run.

Tracy and Jennifer said they have been touched by the community’s reaction since Noah died, including the red ribbons tied around parkway trees.

“The ribbons just started on our block,” Tracy said. “Next thing you know, I’m driving around parts of town and see little pockets of them.”

Kingsley School teacher Ashley Bidlencik was inspired by the VanHoutan family to organize the school’s Dance Off Disease fundraiser. She said teachers started cutting ribbons to tie around trees once they heard about Noah’s death, even though they were on spring break at the time.

“He will always be in all of our hearts in Kingsley,” she said. “He has been a symbol of hope.”

Kingsley is not Noah and Laine’s neighborhood school, but they attended it because it houses the School Association for Special Education in DuPage County classes.

Noah’s teacher, Jackie Crowley, started as a caretaker for Noah and Laine before becoming a teacher.

She said she could always count on seeing Noah at school.

“Lucky for us, we got to see a lot more smiles this year,” she said.

Tracy and Jennifer said they will remember the energetic and smiling Noah that many people did not get to meet before the disease progressed.

Besides Laine, Noah had two other sisters: Emily, 10, who is Laine’s twin sister, and 15-month-old Colette.

Doctors already have tested Colette for Batten disease, and Tracy and Jennifer are confident she does not have it.

Jennifer said Colette already is showing signs of being a smart kid, just like her brother.

“She reminds me a lot of him at this age,” she said.