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Thank you for visiting our website!
We hope to give you
information about Dravet syndrome, epilepsy and most importantly
our courageous son, Christopher. Here you will be able to link
to various organizations, register for the May 17th
5K run/walk, contact our family and keep up to date on
Christopher’s progress.
About Courageous Christopher
Christopher has suffered
from unexplained seizures since 10 weeks of age. After thousands
of seizures, many emergency room visits and hospital stays,
failed medications, respiratory failure after seizures, a month
in the hospital facing near death, the ketogenic diet, six
different neurologists and a lot of worry we finally received a
diagnosis. Christopher has Dravet Syndrome, a rare form of
epilepsy for which there is currently no cure. Dravet syndrome
is a severe pediatric epilepsy that develops in the first year of life. Children
afflicted have a significant impact on their quality of life
from very difficult to control seizures, developmental
regression, sleep disturbances, and more. Fortunately
Christopher was diagnosed at a relatively young age - some of
these children and families go years and years without finding
an answer - just because the syndrome is so rare. Doctor's and
parents don't think about it until it is often much later in the
course of uncontrolled seizures. The prognosis for treatment for Dravet kids is not good. They do not respond well to drugs, some
drugs make the seizures worse (we've experienced this). We have
a long, unpredictable future ahead of us, but if we can do some
good and help make others aware of the syndrome to promote early
diagnosis and help fund research to give Christopher and other
children the best quality of life possible -
we WILL!
A
SEIZURE DOG for Christopher
Christopher has been given an incredible opportunity to obtain a
seizure response dog, through an organization called 4 paws for
ability. Our family must raise $11,000, the amount of money
equivalent to what it will cost for the training and placement
of this service dog in our home. We have planned a 5K run/walk
and stroller strut for May 17th starting at Asbury
Methodist Church in Salisbury, MD. The dog will help alert
caregivers to seizure activity. The dog will provide much needed
balance assistance that will improve Christopher’s mobility. The
dog will also be an invaluable asset in decreasing social
barriers affecting those that suffer from seizure disorders.
Having a dog trained to specifically deal with seizures will
give Christopher more independence as he grows, and will give
his parents some piece of mind.
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