Kids Fighting Niemann-Pick |
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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, Early Childhood Alzheimer’s
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What is Niemann-Pick Type C (NPC)?
Niemann-Pick Type C is a neurodegenerative disease that primarily strikes children in their early childhood years with death occurring before or during adolescence. Happy and healthy children in their early childhood begin to suffer from a painful and gradual neurological decline because of damage to the brain as result of the body’s inability to metabolize cholesterol.
Early symptoms of NP-C are frequent falls, balance problems, loss of vertical eye movements, slurred speech, and learning difficulties. As the disease progresses, seizures begin, children lose their motor skills, eyesight and hearing, as well as the inability to swallow, and ultimately - death.
This life-robbing disease is not only painful for these children, but also their parents who experience a tremendous heartbreak as they watch their children slowly decline both physically and mentally. No child should have to suffer from such pain. Although children worldwide are afflicted, research has been extremely limited primarily because of insufficient funding due to a smaller population of children affected and lack of public knowledge. Currently, there is no cure or treatment for NP-C. |
Save Gabrielle LaVerdeFrom Niemann-Pick Type C |
Gabrielle’s FriendsFighting Niemann-Pick |
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. |
