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Family Helping Fund Research For Rare Disease That Struck Son, Daughter

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DOWNERS GROVE, Ill. (CBS) – They start out growing up like any other child, until a seizure strikes. It’s the first sign of a deadly, rare brain disease that robs children of their abilities before taking their lives.

This weekend, you can help a Downers Grove family try to find a cure for Batten Disease.

Jennifer and Tracy VanHoutan have two children with Batten Disease – their 9-year-old son Noah, and 7-year-old daughter Laine.

“They really are special little people that have been brought into our lives, and that question of why this happened to us will never be answered,” Jennifer said.

“We look at Noah now, and it’s hard. He used to be this vibrant young boy,” Tracy said.

Diagnosed at age 3, Noah can no longer walk, control his motor skills, eat, or see.

Shortly after his diagnosis, Jennifer and Tracy were told the heartbreaking news that their daughter Laine also had Batten. Fortunately, her twin sister Emily does not.

Right now, there is no cure or treatment for Batten Disease.

“We just have to learn to work within how we live each day, and enjoy every moment we have with them, because it’s priceless,” Jennifer said.

Fewer than 450 children in the United States have Batten. Most succumb to the disease between the ages of 8 and 12.

“In the not so distant future, it’s going to take his young life, and that’s not right, and these kids deserve better,” Tracy said.

Now their main focus is trying to find a cure through Noah’s Hope, a non-profit organization they created.

Tracy traveled the world looking for help, and managed to find a doctor at Rush University Medical Center, right here in Chicago. That doctor is now using the foundation’s money to conduct tests on mice.

“We don’t want people’s pity, but we want to fix this, so that other families don’t have to go through this,” Tracy said.

A 5K run and family fun fest will be held on Sunday in Downers Grove, to raise money for more research.

The run is at O’Neill Middle School at 8:30 a.m. Sunday, and the family fun fest is at 11 a.m. Sunday at the Downers Grove Swim & Racquet Club. All money will go to Noah’s Hope.