Sep
10
For the kids
When their son Noah was diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis in March, the VanHoutan family of Downers Grove finally had an answer to the health problems that had been plaguing their once healthy, happy little boy.
An extremely rare disease of the central nervous system with only a couple hundred cases world-wide, LINCL (also known as Batten Disease) causes epilepsy, mental impairment leading to dementia, and the loss of sight, communication and motor skills.
The children who suffer from the disease eventually become bedridden and tube-fed while their parents must live with the knowledge that Batten is a fatal disease, usually claiming its victims between the ages of eight and 12.
Noah’s parents, Tracy and Jennifer, barely had time to come to grips with Noah’s diagnosis before learning that one of their two younger daughters, Laine, 3, also is affected. Laine’s fraternal twin, Emily, has been spared the disease, which results from a defective gene or genes.
Facing these odds, it’s not surprising that those close to the VanHoutans have sought to help. There have been half-marathons, garage sales and other fundraisers to contribute to a trust for the family’s future medical needs. The VanHoutans also started a foundation, Noah’s Hope, to raise money for research and treatment.
Another fundraiser, a garage sale, is scheduled for 9 a.m. to 4 p.m., this Saturday, Sept. 12, at 6618 Fairmount Drive. You can also contribute through the family’s Web site, Noah’s Hope.
“Our two goals are to build awareness and help raise funds for research,” Jennifer said. “I am a native of Downers Grove and feel that so many people are trying to help.”
Noah, like many children with the disease, was misdiagnosed for more than a year following the first appearance of symptoms at age three. His sister’s earlier diagnosis gives her mother hope that “catching Laine’s disease before it’s too late will help her. ” As coordinated and communicative as her twin, Laine loves princesses and attends preschool.
Intent on playing baseball from his toddler days, Noah can no longer walk and requires constant care to keep him safe, Jennifer said.
“We just turned around one day and Noah was gone and we never knew why until this last March.”
Elaine ,
Thank you for the wonderful story about our sweet grandchildren. Norb and I love them very much .
We are grateful for the outpouring of support from our community, friends and people that don’t even know them but find it in their hearts to help.
I have always enjoyed reading your column.
Best regards,
Jacque aka Mamo
Norb is aka Hoppa
DG Residents,
Please stop by the garage sale today if you can — you can’t imagine how many terrific items have been donated by neighbors for this sale! All of the funds go to help this family and others dealing with Batten disease. There will be tables and tables stretching across three driveways — come find something great for yourself, and help this important cause!
Elaine, thanks for highlighting this wonderful family!
On my way, Dan. I love good causes even more than I love garage sales.
I hope that anyone blessed with a healthy child or grandchild will find the time and a few dollars to help this family. They are doing a repeat garage sale next Sat. 9/19 and a Fuddruckers benefit on 9/20.
What a story and what a great effort by this community. I stopped by over th weekend and made a few purchases. They are actually doing it all again this weekend. I’m dropping off a trunk load of newer gently used girls and boys toys for them to seel and keep the money for expenses. I hope it all helps. I’m sayin a prayer for them this week. God Bless this family!
I stopped by, too, and found a couple of items, as well as a blue Noah’s Hope bracelet. Part of the family foundation’s fundraising effort, the bracelets are just $5 each. I’m glad to hear they’re doing another sale, because they had a lot of great stuff.
And every little bit of help and encouragement counts when you are facing the challenges the VanHoutans must deal with.
I hope Noah and his sister get better, tell both of them this: “Jessie Fortin hopes you guys get better.” Thanks so much!