Fox 35 News Orlando

Save Gabrielle LaVerde

From Niemann-Pick Type C

This rare and deadly disease that attacks young children between the ages of 6—10 years of age.  There is no known cure for Niemann-Pick Type C, and once diagnosed, children die within a very short time.  Diagnosis of Niemann-Pick itself, in some cases, takes years, as was the case for little Gabrielle LaVerde.  Here is a list of certain key search words used when trying to identify this rare and deadly disease that attacks young children between the ages of 6—10 years of age.  Niemann-Pick Disorder, Niemann-Pick Disease, Niemann-Pick Type C, Neimann-Pick Disorder, Neimann-Pick Disease, Neimann-Pick Type C, NP-C, Gabrielle LaVerde,  Niemann-Pick is also known as childhood Alzheimer’s disease.  Gabrielle’s Gift, cholesterol, metabolism, genetic, metabolic, lipids, neurological, life expectancy,  speech, gait, developmental, delay, cerebral palsy, occupational therapy, behavioral, neurologist, pediatrician, geneticist, EEG, MRI, CT scan, seizure, medication, Orlando, Florida, Neuro Muscularist, Kennedy-Krieger, Johns Hopkins, Movement, Disorder, Neurology, Baltimore, Degenerative, Disease, Brandon, skin biopsy, stem cell, stem cell research, regenerative medicine, cytotherapy, amniotic stem cell, fatal, terminal, Ara Parseghian, Addi Hempel, Cassi Hempel, Dana’s Angel Research Trust, Jessica Leoni, Kevin Eadie, Jacob DeMeis-Dullea, Luke Liegghio, Race for Adam, Ty Quandt, Ashkenazi, Early Childhood Alzheimer’s, Fox 35 Orlando

 

 

 

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The morning after Lloyd Marcus issued his press release (see below) urging Central Floridians to Unite to Save a Dying Deltona Girl, Gabrielle LaVerde, Fox 35 Orlando contacted us and requested an interview.

 

The news station was very interested in the dedicated efforts in which Gabrielle’s school had collected over $10,500 for her medical treatments.  See DLE’s Big Give for details. 

 

We sat at local park for several hours and found the experience to be warm and compassionate.  Everyone took turns shedding a tear as we shared our stories and feelings about Gabrielle’s situation.  As  the interview came to a close,  however, Gabrielle and Shay Harris, a Fox 35 reporter, shared some time together, and yes, Gabrielle gave her a smile!

While, Photographer, Marcel McSwain was busy recording the children at the park, he found himself in quite a predicament—on top of the play ground, nested in-between the  monkey bars and the slide.  There was only one thing to do!

At the close of the interview, we had made new friends, and hoped that we helped others understand this horrible disease.  We hoped that other parents who may be going through a nightmare of diagnosis trials for their child may suggest this disease to their pediatrician.  We hoped that our message would rally Central Floridians to get involved and help save Gabrielle.  More importantly, we hoped we made it clear that what the Elementary school students, their parents, teachers, staff and community did for Gabrielle was truly a Big Give.  We hope that Central Florida watched what Kindergarteners, First, Second, Third and Fourth Grade students can do once they put their mind to it!

By Shay Harris, FOX 35 News

DELTONA, Fla. (WOFL FOX 35, Orlando) -- A six year old Deltona girl gets a little help from her friends who hope they can help her battle a deadly disease.

As Gabrielle LaVerde sits in the park with her mother, she can only watch the other children run and play.  Sometimes, her frustration is obvious.

"It kills me," says her mother, Danielle LaVerde. "It breaks my heart to know that she wants to do these things and she knows she can't do it, this is not what childhood is supposed to be like she's supposed to be able to run and play and she can't it's not fair."

Danielle says Gabrielle was diagnosed with a rare disease called Niemann-Pick Type C. It keeps her body from breaking down cholesterol so it's stored in her brain, liver, spleen, and bone marrow.  It also destroys healthy tissue.
     
"They're linking it to Alzheimer's because it's similar in the way it destroys the brain, the effects are similar," said Danielle explaining her daughter's illness.

Neimann-Pick Type C has a life expectancy of six to ten years after diagnosis. There's no cure; only nine-thousand-dollar treatments to help ease symptoms that render Gabrielle unable to speak, walk, or even think.

"She can't tell me what she wants to drink, she can't tell me anything, I just have to guess, what's wrong."

Thats why Gabrielle's Deltona Lakes Elementary schoolmates, like ten year old Ryan Bowling are fighting to save her life, raising ten thousand dollars to help pay for treatments.

"My mom does movies to save dogs, if she can help a dog survive like that, she can help a human then Gabrielle might need a lot of help," said Bowling.

"He threw me off guard," said Bowling's mother Gisele Veilleux. "He handed me the flyer from school and said mom get to work."

Danielle says it took four years of doctors & tests before she was finally diagnosed. She says she hopes telling Gabrielle's story other children and their parents won't have to wait that long.

"To know that her life will just be a slow decline, day by day to watch her go away a little bit more everyday, I can't describe as a parent how that breaks my heart."

For more information about Neimann-Pick Type C or how you can help Gabrielle LaVerde, visit:  www.GabrielleLaVerde.com.

What do we Need?

 

The kids at DLE have shown us that a Big Give needs to be creative!  Some have donated their frequent flyer miles, hotel  points, you name it!  Anything to help Gabrielle get the treatment she needs.

 

We are hoping that we can find a Printing company to help us print flyers, a T-shirt company to make t-shirts for our supporters and volunteers to help spread the world, and a company that will make simple bumper stickers for our community. 

 

We also need more photos or video of the fund raising evening so we can include them in videos and on this webpage of that spectacular evening!  Please email GiseleVeilleux@earthlink.net if you have any photos you’d like to share.

Gabrielle on

Fox 35 News 02/29/08