Noah’s Story by Tracy and Jennifer Van Houtan, Noah’s parents
Noah Van Houtan is a six-year-old, sweet, loving boy who adores trains, the movie Cars and his twin sisters Laine and Emily. His smile lights up our world.
Early Signs
Noah developed normally until the age of three. At three we noticed that he exhibited a speech delay and began having tremors. Our first neurologist said that these symptoms were normal for a boy, and that he should grow out of them.
Months later, Noah collapsed and stopped breathing. We had no idea what had happened, but the doctors told us it was probably a seizure. It was the most frightening day of our lives.
A couple of weeks later, Noah had another seizure and was diagnosed with childhood epilepsy. About nine months after the epilepsy diagnosis, an MRI scan revealed some atrophy of his brain, but no cause. We also noticed Noah's speech began regressing, and he had difficulty performing simple activities such as eating with a fork and brushing his teeth.
Duke Children’s Hospital Sheds Some Light
After several months, a friend of the family put us in touch with Duke Children’s Hospital. Within weeks, Jen, Grandma Jacque and Noah drove 850 miles to Duke for a two-week evaluation. The team ran every test imaginable to determine the cause of his seizures. Noah started a special diet to control seizures called the Ketogenic Diet. Noah responded very well to the Ketogenic Diet, his seizures were reduced dramatically, and the fog around him seemed to lift. Noah, Jen, and Grandma Jacque returned home after two weeks and Noah was doing great… we were getting our little boy back.
News No Parent Wants To Hear
On March 17, 2009, our lives changed in a way no one could imagine. As we were sitting down for our St. Patrick's Day dinner, we received a call from Noah's neurologist at Duke Children’s Hospital. Two of the tests, which had been sent to separate labs, came back confirming the same diagnosis. Noah was diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), often referred to as Batten Disease. Over the next few hours, as we researched this disease, our world quickly crumbled.
The Disease
Batten Disease is a cruel and rare childhood disorder for which there is currently no cure. Over time, children affected by Batten Disease/LINCL suffer from epilepsy, become unable to communicate, become mentally impaired, and lose their sight and motor skills. Eventually they become bedridden, tube fed, and suffer from dementia. Currently Batten Disease/LINCL is always fatal and ends in death, usually between the ages of 8 and 12.
Noah has lost most of his speech, the ability to feed himself, and the ability to walk. It is devastating to watch your child lose skills and not be able to do anything about it.
Noah’s Hope
Noah's will and determination have not wavered. Every day is a struggle, but he continues to smile. He has gone from being a chatty child who ran, jumped, and played, to a silent child who needs constant care. Noah’s Hope, and ours, is that researchers will soon discover a cure for this devastating disease.
For more information about Batten Disease, please visit our About Batten, Causes & Symptoms, and Treatment, and Research Pages.
