Market, auction slated to raise money for Noah's Foundation
Batten disease touches less than 450 children in the United States. But until a cure is found, it will take each of their lives between the ages of 8 and 12.
Noah's Foundation members believe their illness warrants serious research, just like any childhood disease.
And it's working to raise the money and support required to make that research happen.
Residents will have an opportunity to support the foundation's efforts today, Nov. 14, when the Bridgeland community in Cypress hosts its first Noah's Hope Gift Market and Silent Auction.
Admission is free and it is open to the public.
The event, set for 10 a.m.-4 p.m., will take place at Lakeland Activity Center and Festival Park, 16902 Bridgeland Landing.
Coordinator Christy Valenzuela, a Bridgeland resident, has lined up about 50 vendors, who will offer products ranging from children's clothing and yard art, to specialty cakes and jewelry.
Silent auction items include a one-night stay at South Shore Harbour Resort, movie passes, autographed sports memorabilia and a $250 Perry's Restaurant gift certificate, among other selections.
The day also will feature barbecue plates, Italian ice, a children's play area, an indoor play and rest area for babies and a live band.
"It's almost like a festival," said Valenzuela, who has organized two Alessandra's Angels Craft Show and Silent Auctions in Bridgeland for a friend who lost a child to cancer.
Bridgeland's corporate team learned about Noah's Hope from co-founder Jen VanHoutan, the media planner for Bridgeland developer, General Growth Properties.
When team members asked Valenzuela to help, she said yes almost immediately. "It's one of those things you read, and you have to do something.
"To have a family that is suffering and wants to give …We always think our lives are so hard. Here they are, and they're standing up for everybody else's kids, too."
Jen and her husband, Tracy VanHoutan, created Noah's Hope Foundation after their 6-year-old son, Noah, and 4-year-old daughter, Laine, were diagnosed with Batten disease.
For the first 2 ½ years of his life, Noah gave no indication anything was wrong.
"He developed normally as a child," Tracy said.
"He had a big vocabulary. He loved to run and jump and play."
But everything turned upside down when, about 3 ½ years ago, Noah collapsed while playing and stopped breathing.
He was resuscitated and taken to the emergency room.
"We had no idea at that time that he'd experienced his first seizure," Tracy said.
After more episodes, he was diagnosed with childhood epilepsy and put on anti-seizure medication.
But months later, Noah's speech began regressing and he started struggling with such simple activities as brushing his teeth and eating with a fork.
At the recommendation of a friend, the family took Noah to Duke Children's Hospital for two weeks of testing.
On Saint Patrick's Day, 2009. Noah's neurologist diagnosed him with late infantile neuronal ceroid lipofuscinosis, better known as Batten disease.
The form Noah has causes seizures, loss of muscle coordination and mental deterioration and ultimately, death.
"You can never really imagine learning your child's life is half over," Tracy said. "There's no treatment, no cure."
Tracy and Jen later had Laine and her twin sister, Emily, tested for the genetic disorder.
At age 3, Laine tested positive.
"That was also a punch in the gut," Tracy said.
Now the family is directing its energy toward supporting research.
Because Batten disease is rare, it receives almost no federal funding, Tracy said.
"These kids deserve better, he said.
Currently, Noah cannot walk, talk or feed himself.
"We still love him to death," Tracy said. "It's hard to think back and realize how much he's lost."
It hurts to think of Laine going down the same path, too.
Since her diagnosis, she has started experiencing seizures.
The VanHoutans are asking the public to support fund-raisers like the gift market and to spread the word about Batten disease and their foundation. For more information about Batten disease, visit www.noahshope.com or www.BDSRA.org.
For more about the gift market and silent auction, visit www.bridgeland.com/events/noahs-hope .