First, it began with Noah, growing into a healthy toddler who loved baseball and dreamed of playing for the Chicago Cubs until his world began to collapse. Noah began to experience seizures, speech delay and an extreme loss of motor skills. Today, sometimes every minute is a struggle for nine year old Noah and his family. He is confined to a wheelchair, feeding tube, visiting nurses and rather than attend a game of his favorite team, he spends his free time away from home in emergency rooms.
A family challenged enough by unfamiliar illness, Laine, Noah’s younger sibling, runs into her parent’s room one evening. Panic-stricken, she is crying that she can’t see, she can’t walk and asks if she will be just like her brother. Today, Laine can no longer stand safely, let alone perform in ballet class as she had once started. Nor does she have the dexterity to color with her Mom. Laine is currently in a walker and it is a struggle to feed her as seizures take control of her fragile body. And she, too, was diagnosed with the deadly disease that has an age twelve life expectancy.
Noah and Laine suffer from Batten Disease, a rare genetic illness that presently affects 2 to 4 of every 100,000 births in the United States. Laine has a twin sister, Emily, who does not have the disease. Affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and unable to communicate.
Presently, it is fatal.
Located in the southwest suburbs of Chicago, the VanHoutan family has established a website called Noah’s Hope before Laine had been diagnosed. The website does more than provide information about the disease and children’s progress. It acknowledges the determined, never-ending efforts the family has taken to support initiatives in finding a cure; fighting for their own as well as other children stricken with Batten.
This is their passionate drive in a desperate career they never thought would be their focus. Through it all, they are living their lives surrounded by a family of beautiful children, a sincere purpose to help others and an appreciation most will never understand. Sometimes life really gives the unthinkable but those that are surrounded by those circumstances become such special blessings. They teach us what is really important and should be cherished.
Please visit the VanHoutan family at Noah's Hope where you can volunteer in their efforts and learn more about donations. You may also contact Amy Conn, Director of Advancement for Cures Within Reach at 847-745-1246.