Local children, 7-year-old Noah VanHoutan and his 5-year-old sister Laine are suffering from Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), a form of Batten disease, an incurable genetic disorder. While both started life as regular kids, they are now experiencing mental impairment, seizures, and progressive loss of sight and motor skills. At this time the disease is always fatal, and for the form that Noah and Laine have, LINCL, typically between the ages of 8-12.
To help speed along research, a fundraiser will be held to celebrate family and the joy it brings entitled, "Noah's Hope -- Fun In the Sun". The goal of the day is to raise monies for Noah's Hope Fund to advance the research needed to discover a cure to help Noah and Laine, and the other children like them.
Noah's Hope -- Fun In the Sun will be held on Saturday, May 21 at the Downers Grove Swim & Racquet Club, 5560 Fairview Ave. in Downers Grove.
The day will consist of a 5K Fun Run, Kids' Fun Run, and a Family Palozza. The Family Palooza will feature the Jesse White Tumblers, magicians and balloon artists, or you can play in a bouncy house or visit the petting zoo; have your face painted, swim in the pool, touch a Downers Grove Fire Truck, and more!
5K Fun Run registration fees will be $20 before May 18 and $25 day of the event. The Kids' Fun Run will be $10 each, and cost for entry to the Family Palozza will be $10 per person, with children under 2 free. Food, beverages and game tickets will be additional.
Go to www.NoahsHope.com for a full schedule and to register for the 5K Fun Run. All of the event proceeds will go to Noah's Hope Fund. For more information, on Noah's Hope visit www.NoahsHope.com.
About Noah and Laine
Noah VanHoutan was a perfectly healthy, active little boy who loved baseball and trains. When he turned 4, he began experiencing a number of seizures and in the last three years has lost most of his speech, his ability to feed himself, and his ability to walk unassisted. His 5-year-old sister Laine is an energetic preschooler who skips rope and loves princesses. Unfortunately, she too is experiencing seizures and developmental delays due to Batten Disease. Laine's fraternal twin sister Emily does not have Batten disease. The VanHoutan family lives in Downers Grove. They are urgently exploring all research and treatment options to find a solution that will aid their children, and other children like them.
About Noah's Hope Fund and the DuPage Community Foundation
The mission of Noah's Hope Fund, a donor-advised fund with The DuPage Community Foundation, is to support innovative research, create awareness and education, develop early detection methods, advance treatment techniques, and ultimately find a CURE for Late Infantile Neuronal Ceroid Lipofuscinosis or a form of Batten disease.
About Batten Disease
The type of Batten disease the VanHoutan children have is also known as Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL). It occurs in an estimated two to four of every 100,000 births in the United States. Over time, children affected by Batten disease suffer from epilepsy, become unable to communicate and mentally impaired, and lose their sight and motor skills. Eventually they become tube fed, bedridden, and suffer from dementia. At this time, Batten disease is always fatal and ends in death, usually between the ages of 8 and 12.