family fights for children inflicted with fatal disease

In 33 years I have had about 6 students with this degenrative disease. ~K

Local family fights for children inflicted with fatal disease

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By Noah VanHoutan was diagnosed in March with Batten Disease, a rare
genetically inherited condition. Last month, Noah's sister, Laine,
(standing) also was diagnosed with the disease. Her fraternal twin,
Emily, tested negatively for the disease. The children's parents, Tracy
and Jennifer, are hoping a fundraiser set for Oct. 10 in Woodridge will
help raise awareness of the disease.Photos

By Natalie Morera, nmorera@mysuburbanlife.com
Downers Grove Reporter
Wed Sep 23, 2009, 11:07 AM CDT

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Downers Grove, IL -
Every so often, there's a glimpse of Noah being a regular 5-year-old.

"He'll ask constantly to go to the train," said Jennifer Farnaus
VanHoutan, Noah's mother.

After seeing multiple doctors and specialists for about a year, Noah was
diagnosed in March with Batten Disease, a rare genetically-inherited
disease that is fatal.

"We were almost relieved to find out Noah's diagnosis even though it was
the worst thing in the world," said Jennifer.

Knowing what the diagnosis was relieved the family — now they have to
become proactive, treating the disease that has no cure.

"We were told, 'Enjoy your kid and good luck,'" Jennifer said.

The disease is similar to Alzheimer's. It causes mental impairment,
seizures and a loss of sight and motor skills. Eventually, those
affected will be bedridden, blind and non-communicative. The life
expectancy for Late Infantile Batten Disease, the kind that Noah has, is
8 to 12 years old.

The news continued to get worse. One month ago, Noah's 3-year-old
sister, Laine, was diagnosed with the same disease. Laine never showed
signs before her diagnosis, and to date has had one seizure.

The family had decided to test Laine and Emily, fraternal twins, as a
precaution. Emily does not have the disease.

Help battle Batten
WHAT A fatal disease affecting two Downers Grove children
WHO Noah, 5, and Laine, 3
NEEDED Funds to increase awareness about the disease, and to cover
medical expenses
HOW Visit noahshope.com, click on donations
Noah's father, Tracy, has researched different ways to slow down the
disease. The family has tried different diets, vitamins, medications and
physical therapy — but so far no drastic changes have occurred.

The family has been working to raise money not only for research, but
also to raise awareness and to help offset medical costs.

Tonie Harrington, a family friend for 35 years, said when she found out
about Noah's and Laine's disease, she needed to do something.

"They have three gorgeous children and now they're being told they're
losing two of them," Harrington said. "I can't imagine what they're
going through."

So to do her part, Harrington volunteered to have garage sales at her
home to raise money. After two weekends of sales, she raised $6,000 for
the Noah VanHoutan Family Trust Fund.

The money can help the family pay for medical expenses that are not
covered by insurance. Noah uses a walker that costs the family about
$3,000. It has been recommended by his physical therapist to use a
special feeding chair, which is about $6,000, but the family has put it
off due to costs.

They also have a foundation set up through the DuPage Medical Foundation
specifically to raise money for research.

Harrington said she got an unbelievable response from people who donated
their items and time. She said she had some people handing her $20 for a
$3 item.

Harrington said she keeps her hopes high.

If you go
WHAT "Notes for Noah" karaoke fundraiser
WHEN 5 to 10 p.m. Oct. 10
WHERE Shanahan's Pint House, 75th Street and Woodward Avenue, Woodridge
WHY Proceeds raised will go to a foundation set up in Noah's name to
assist the family and to aid in medical research fo"I keep expecting someone with a million dollars to come in and say,
'Let's save these children,'" Harrington said.

Harrington refers to the disease as "an orphan disease" since it is not
well known.

"There's not enough people dying from it, so it's not important,"
Harrington said.

Jennifer said that each time they see a new doctor they must explain the
disease because no one knows about it. She said there are about 200 Late
Infantile cases in the country, and her children are two of those cases.

The family will be putting up billboards in Chicago and will continue to
try and raise awareness wherever possible.

Two people running the New York City Marathon will be raising money for
the cause as will another two people in an Iowa half marathon.

Mrs. Kathy, Visual Impairments Specialist
W Elementary School