On August 14th 2004, we were proud parents of our baby girl Tyra. She
was such a blessing brought into our family and her brothers and sisters
adored her dearly. At the age of 2 months Tyra was having weird
movements and several of them daily. I called her doctor they immediately
sent us to the Children's hospital to have a EEG. I was sitting in the waiting
room and the neurologist came out and pulled up a chair. She told
was such a blessing brought into our family and her brothers and sisters
adored her dearly. At the age of 2 months Tyra was having weird
movements and several of them daily. I called her doctor they immediately
sent us to the Children's hospital to have a EEG. I was sitting in the waiting
room and the neurologist came out and pulled up a chair. She told
me that Tyra had infantile spasms. What that meant to me? Nothing that couldn’t be
cured. After she told me about this disease I asked her what we had to do to fix it? That
is when the news came that it could never be fixed. Still at that moment in time I had
faith in my heart that there was something out there. So I went home that night and
instantly jumped on the internet to find more about this “infantile spasms” at that point
and that point only was the first time that I felt helpless. Everything I read was horrific! I
planned her life from that point. She will be medicated for life and she will never be
normal. Every night I had negotiations with God. We didn’t know where to go from there.
As Tyra progressed through the next couple of years, I was so thrilled she could
actually walk! I never thought I would see that day.
In November of 2007 things took a turn for the worst. Tyra has lost her ability to walk
and even many days the ability to hold up her own head. She suffers from around 25-
50 seizures each day (myclonic,atonic,drop seizures, partials…etc) She is unable to
talk, show any emotion or even recognize her family at times.
For more information on Tyra, visit http://hopefortyra.googlepages.com/hopefortyra2
Submitted by Tyra's mother, Casey.
cured. After she told me about this disease I asked her what we had to do to fix it? That
is when the news came that it could never be fixed. Still at that moment in time I had
faith in my heart that there was something out there. So I went home that night and
instantly jumped on the internet to find more about this “infantile spasms” at that point
and that point only was the first time that I felt helpless. Everything I read was horrific! I
planned her life from that point. She will be medicated for life and she will never be
normal. Every night I had negotiations with God. We didn’t know where to go from there.
As Tyra progressed through the next couple of years, I was so thrilled she could
actually walk! I never thought I would see that day.
In November of 2007 things took a turn for the worst. Tyra has lost her ability to walk
and even many days the ability to hold up her own head. She suffers from around 25-
50 seizures each day (myclonic,atonic,drop seizures, partials…etc) She is unable to
talk, show any emotion or even recognize her family at times.
For more information on Tyra, visit http://hopefortyra.googlepages.com/hopefortyra2
Submitted by Tyra's mother, Casey.
