Family Dreams of a Cure that will "Save Our Darling Babies"

Seven-year-old Noah VanHoutan and his 5-year-old sister, Laine, of Downers Grove, are both fighting a devastating, rare disease: Late Infantile Neuronal Ceroid Lipofuscinosis, a form of Batten disease, which has robbed Noah of his speech, balance and mobility.

Children with this condition currently have a life expectancy of eight to 12 years. 

"Every day brings new challenges for us and our family," said Tracy VanHoutan, Noah and Lainie's father. "We are not sure how much time we will have with Noah and Laine, but we do plan to live life to its fullest while we can.

Noah currently attends  in Woodridge. You can support this local family at the 2nd Annual "Fun in the Sun" event.

The all-day Family Palooza will include live performances from magicians, face painters, kid's music, bouncy houses, a petting zoo and the Jesse White Tumblers. The event will be held at the Downers Grove Swim and Racket Club. 

All event proceeds will benefit the Noah's Hope Fund, a charity dedicated to  increase awareness of Late Infantile Neuronal Ceroid Lipofuscinosis, as well as help develop early detection methods, advance treatment techniques and ultimately, a cure.

Currently, fewer than 450 kids in the United States suffer from Batten's disease. The Centers for Disease Control contributed less than $5 million to Batten research in 2008, and only a handful of scientists around the world are focused on potential therapies.

"We are determined to make a difference for children with Batten Disease," VanHoutan said. "Will it help our children?  Maybe, maybe not. But this is a treatable and cureable disease, and we are doing all we can to one day rid the world of Batten disease, a cruel disease that first takes away childhood, then takes away our children."

Last year, more then 500 people attended Fun in the Sun, and the event raised approximately $10,000. This year, they family expects 750 people and are hoping to bring in $15,000. In addition to the family events, the day also includes a 5K Fun Run.

Funds will go to the Noah's Hope Fund at the DuPage Community Foundation. These funds will be used to fund research projects to develop treatments / cure for Late Infantile Batten Disease.

If you cannot attend the event but still want to donate to Noah's Hope, you can donate online.

"We still have many dreams for our children, but they are not what we originally planned. We dream of happy memories together, we dream of a delay in Noah and Laine's symptoms, and we dream of a cure that can save our darling babies," said VanHoutan. 

"Although he can no longer walk or talk, Noah still lights up when he sees his sisters. And everyone around him lights up when he is near. It is Noah's Hope, and ours, that together we can find an answer that will save Noah, Laine and the other children who are courageously fighting Batten Disease."