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Welcome
to Blake's Purpose.
Our reason for creating this website is to let you
into Blake's life and chronicle his ongoing battle
with Batten's Disease/NCL. It is our hope that we
can help to educate, increase awareness, and raise
money for research to help us and others like us fight
this disease that currently takes the lives of all
its young victims.
Blake has Late Infantile Neuronal Ceroid Lipofuscinosis
(NCL), which is a brutal and debilitating disease
that attacks all functions of the body. Symptoms of
this disease are linked to an increase of lipopigments
in the body's tissues; causing seizures, loss of vision
and mobility, and eventually dementia. Children diagnosed
with this disease are missing a gene that is responsible
for eliminating the cells of this build up. Over time
the buildup of lipopigments causes the death of cells
found in the brain, retina, and central nervous system.
The death of these cells is devastating to the brain
and body's development & function.
Blake's journey began on January 11, 2002 when he
was born; he was a very beautiful, healthy, and happy
baby. As the oldest of two children, Blake has always
been full of life; as a toddler he was rambunctious,
mischievous, funny, and loving. He loved to jump around
and play with his "papas" tractors, roll
around in the dirt, and interact with his friends.
He was everything a child at his age should have been.
The doctors were pleased with Blake's growth; he hit
all of his developmental milestones as a young boy,
with the exception of being speech delayed. Concern
arose when Blake still wasn't talking much at 3 years
old, but the doctors said that there was nothing to
worry about. They said that boys more often develop
a little slower than girls and just to give him time.
It was not until his 4th birthday in January of 2006
that the first sign of a problem arose; Blake started
collapsing at his knees for no apparent reason, which
was causing him to fall. This didn't seem to bother
Blake, he would just pick himself up and continue
to play, however as a parent this was a huge red flag.
After seeking the advice of his pediatrician, Blake
was referred to a neurologist for further analysis.
It was about 4 months after the collapsing began that
Blake started having seizures, and that week Blake
was admitted into the hospital for a series of testing.
By June of 2006 Blake was diagnosed with Late Infantile
NCL. It has been two years since his diagnosis, and
Blake has lost his vision and can no longer walk.
He also has a feeding tube because swallowing became
an issue. He is on six different medications and thankfully
we have good seizure control. We are fighting an uphill
battle and doing our best to keep Blake stimulated
both mentally and physically. Presently he is involved
in speech & physical therapy, along with therapeutic
horseback riding. All things considered, we feel blessed
to have him with us and find it encouraging to live
in a day and age where so many research avenues are
being explored for potential treatments and cures
intended for Battens Disease.
Blake has a love for so many things; his favorite
movies are Elf and Monsters, Inc. He loves the Wiggles,
and although his vision is worsening, it puts a smile
on his face just to hear them singing in the background.
He loves to swim, swing, play, and he can still light
up a room with his smile. He has touched our lives
and hearts in so many ways. He has shown us what it
is like to love the world though his eyes, and challenged
us to fight for his life.
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