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My name
is Kelly Takacs and along with my husband, Jason, I can tell you
that our personal hero is our son, Ethan William Takacs. He was
born on June 13, 2005 and he has SMA Type 1.
Ethan
was diagnosed with SMA on October 6, 2005 at almost 4 months of
age. I felt like the wind had been knocked out of me. The
world just spun around me and I held my precious little baby boy
in my arms and felt like everything was ending. But it didn't.
And neither has our determination to fight SMA and WIN.
We saw
Dr. John Bach immediately after Ethan was diagnosed and became
very proactive in handling what fate had handed to us. We
follow the NIV protocol and Ethan is doing amazing because of
this. Ethan sleeps at night and for his nap on a ventilator
with a nasal mask, gets routine cough treatments each day,
suctioning as needed, chest physiotherapy on a draining wedge,
and is g-tube fed. He is also one of the happiest little guys
you will ever meet.
Ethan
loves to play and we help make play-time easier for him with
his Tumbleform chair and with his slings which suspend his arms
and legs so they can move easier. He loves to feel
independent! Ethan also loves Clifford the Big Red Dog, Blue's
Clues, the Backyardigans, Go Diego Go, being read to, horses,
the New York Yankees, and coloring and painting.
We have
an amazing family and Ethan's grandparents, aunts, and uncles
are so good to him. Ethan's best friend is Billy. Billy also
has SMA Type 1 and he lives in the same town as us! Ethan and
Billy get together for Music Together every week and they shake
their little instruments and sing together! We also take the
boys to the Aquarium, Zoo, and the Circus! They are so good
together and our families have become extremely close as well.
SMA is
not easy, but we love Ethan so very much and everything we do
and go through is so worth it. He is the greatest and I
wouldn't trade my "Little Chicken" for anything in the world!
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