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Seaira was born April 27th 1998. She was 7 pounds 11 ounces. She was and still
is the apple of my eye! She was a healthy and happy little girl who slept all through
the night since the first night I brought her home! She developed fairly normal, she
never did walk on her own but came really close.
Like most families who have gone through this horrible thing called "Rett
Syndrome" we can pin point the exact day this monster came and stole Seaira's
right to a "normal" life away from her! At the beginning she was diagnosed as
being Autistic, which is a common misdiagnoses at the early stages. She lost
focus, couldn't keep eye contact and became pretty violent. She rocked so hard
that she broke our glider rocker and she would bite anything and everything that
she could, let me tell you it didn't feel very good!
It wasn't until Seaira started attending Portland Early Childhood center that we
learned about Rett Syndrome. Her physical therapist, Lori K., had worked with
another girl that had Rett Syndrome and noticed the similarities right away. At this
time she was starting to get her eye contact back and the hand wringing began! I
read all the information I was given and was in complete denial, I compared Autism
with Rett Syndrome and thought that Autism sounded a little better, like I had a
choice between them or something! I finally caved in and took her to see Dr.
Budden up at OHSU and she diagnosed her with Classic Rett Syndrome with in 5
minutes of seeing her. We had the blood work done as well!
This was back in July of 2001. That is how the nightmare began! Seaira is 10 now,
she still doesn't walk or talk, she has seizures and a Vegal Nerve Stimulator
implanted in her chest, she has scoliosis and is facing back surgery anytime now,
she can pick up things with her hands but can't hold on to them for more then a
few seconds, she has a feeding tube and has had surgery for her acid reflux.
Can you believe even after dealing with all of this, she still finds a way to smile
everyday and warm the hearts of everyone she meets!
Please help fight this battle, donate if you can, every little bit helps!
Much Love, Gail and Seaira Hiebert
is the apple of my eye! She was a healthy and happy little girl who slept all through
the night since the first night I brought her home! She developed fairly normal, she
never did walk on her own but came really close.
Like most families who have gone through this horrible thing called "Rett
Syndrome" we can pin point the exact day this monster came and stole Seaira's
right to a "normal" life away from her! At the beginning she was diagnosed as
being Autistic, which is a common misdiagnoses at the early stages. She lost
focus, couldn't keep eye contact and became pretty violent. She rocked so hard
that she broke our glider rocker and she would bite anything and everything that
she could, let me tell you it didn't feel very good!
It wasn't until Seaira started attending Portland Early Childhood center that we
learned about Rett Syndrome. Her physical therapist, Lori K., had worked with
another girl that had Rett Syndrome and noticed the similarities right away. At this
time she was starting to get her eye contact back and the hand wringing began! I
read all the information I was given and was in complete denial, I compared Autism
with Rett Syndrome and thought that Autism sounded a little better, like I had a
choice between them or something! I finally caved in and took her to see Dr.
Budden up at OHSU and she diagnosed her with Classic Rett Syndrome with in 5
minutes of seeing her. We had the blood work done as well!
This was back in July of 2001. That is how the nightmare began! Seaira is 10 now,
she still doesn't walk or talk, she has seizures and a Vegal Nerve Stimulator
implanted in her chest, she has scoliosis and is facing back surgery anytime now,
she can pick up things with her hands but can't hold on to them for more then a
few seconds, she has a feeding tube and has had surgery for her acid reflux.
Can you believe even after dealing with all of this, she still finds a way to smile
everyday and warm the hearts of everyone she meets!
Please help fight this battle, donate if you can, every little bit helps!
Much Love, Gail and Seaira Hiebert
