Click ''donate" to make an online contribution to Rett Syndrome research in honor of Amanda!
Amanda was born on December 25th, 1987 in Salt Lake City, Utah. She was a very quiet
baby, hardly ever cried, and ate very little. The only thing she had problems with, was a
little bit of reflux, that back then, doctors didn't do much for her. As she grew up, she
started doing things quite early on, such as sitting up on her own, rolling from one side of
the room to the other, and having 2-3 word sentences.
We began her in Early Interventions after we moved to Reno, NV in early 1989. When she
was just 14 months old, she had her first seizure, and they began her on Phenobarbitol to
help control them. This helped seizures, but made her a very grumpy little girl. After that,
she stopped talking, and started back to just babbling and cooing, but continued her
crawling and rolling. She had been in the Early Interventions for about 6 months, and they
diagnosed her with Autism and CP. It was then that I had to research, as I was not happy
with the diagnosis of Autism. I found that Amanda only had some similarities of Autism, and
wanted a second opinion.
When she was barely 3 years old, we moved to California, had taken her to a new Neuro
specialist to hopefully change her medications, as I had found out that Phenobarbitol was
deadly in mice. When Amanda saw this doctor, he was well informed, changed her
medications, and had suggested that Amanda may have Rett Syndrome. He explained that
he had worked with Dr. Richard Haas in San Diego, CA. He went on to explain what Rett
Syndrome was, and that he felt Amanda should go to San Diego and see Dr. Haas.
Amanda was diagnosed with Classic Rett Syndrome in Feb 1991, by Dr. Richard Haas, in
San Diego, California. She had been mis-diagnosed, as I had suspected, and was told it is
common to be mis-diagnosed with Autism. Amanda then had to begin multiple tests, and
check ups, and got her very first wheelchair.
Through the years, Amanda has endured so much. She has gone through multiple heel
chord, and hamstring surgeries. She went through several years of using back braces for
Scoliosis, to no avail. Her curve just kept getting worse, no matter what they tried. In 1996,
Amanda had to have Scoliosis surgery, as her curve was putting a major organ at risk.
They also did her Fundalplycation, and placed a G-Tube at this time. This surgery nearly
took her life 2 times. The first time, her heart stopped in the middle of surgery, so they
revived her, closed her up, and gave her 7 days to recooperate. The second time, they
hadn't even started the surgery, and her lung collapsed. Again, another 7 days to
recooperate. After being in the hospital 18 days, they finally were able to complete her
corrective surgery. She spent a total of 28 days in Children's hospital in Fresno, CA.
Since this surgery, Amanda never regained her ability to crawl, which was her way of
getting around.
We moved back to Reno, NV in Feb 2001, 10 years, and 3 siblings later. I had not been
able to get her back to a Rett clinic, as they were always just to far to travel for Amanda.
Since then, we have moved to Western Maryland, and loving it. Amanda has been very
healthy, up until July of 2008, when Pneumonia nearly took her life. With persistance, and
a mothers love, I insisted on finding the problem she was haiving. She had not been
eating, or drinking well for nearly a week. After 3 days in the hospital, they found
pnuemonia, and were able to get her back on track.
After 18 years since her last visit to a Rett clinic, I am happy to announce that we finally got
her in to one. Took her to Kennedy Krieger Institute, she saw Dr. Naidu, and we are very
pleased to be able to get her there. We plan on taking her back as often as we can.
Amanda seemed to be ok with the new doctor. Ironically, this is the same doctor we met
back in 1991 at a Rett Syndrome conference, where people there called Amanda the
"blonde one". I was very excited to meet her once again.
Amanda graduated in June 2009, from Allegany High School in Cumberland, Maryland. I
am so proud of her! Amanda has always been a happy girl. She has her days, just like
any of us. There are days still yet, that we are up all night together. Most of these times,
she is up having a giggle party, and other times, crying all night.
Now that I am able to take Amanda to clinic, I can only hope that someday soon, they will
find the cure we so desperately need! It saddens me that every day, Amanda has
something to tell me, but can only express her true wants and needs through those
beautiful baby blues, and cannot tell me through words.
Thank you all for coming to Amanda's website, to get to know her better. And if Amanda
could, she would thank you too. We hope you continue to help, by spreading the word
about Rett Syndrome, and donating to help find the cure.
baby, hardly ever cried, and ate very little. The only thing she had problems with, was a
little bit of reflux, that back then, doctors didn't do much for her. As she grew up, she
started doing things quite early on, such as sitting up on her own, rolling from one side of
the room to the other, and having 2-3 word sentences.
We began her in Early Interventions after we moved to Reno, NV in early 1989. When she
was just 14 months old, she had her first seizure, and they began her on Phenobarbitol to
help control them. This helped seizures, but made her a very grumpy little girl. After that,
she stopped talking, and started back to just babbling and cooing, but continued her
crawling and rolling. She had been in the Early Interventions for about 6 months, and they
diagnosed her with Autism and CP. It was then that I had to research, as I was not happy
with the diagnosis of Autism. I found that Amanda only had some similarities of Autism, and
wanted a second opinion.
When she was barely 3 years old, we moved to California, had taken her to a new Neuro
specialist to hopefully change her medications, as I had found out that Phenobarbitol was
deadly in mice. When Amanda saw this doctor, he was well informed, changed her
medications, and had suggested that Amanda may have Rett Syndrome. He explained that
he had worked with Dr. Richard Haas in San Diego, CA. He went on to explain what Rett
Syndrome was, and that he felt Amanda should go to San Diego and see Dr. Haas.
Amanda was diagnosed with Classic Rett Syndrome in Feb 1991, by Dr. Richard Haas, in
San Diego, California. She had been mis-diagnosed, as I had suspected, and was told it is
common to be mis-diagnosed with Autism. Amanda then had to begin multiple tests, and
check ups, and got her very first wheelchair.
Through the years, Amanda has endured so much. She has gone through multiple heel
chord, and hamstring surgeries. She went through several years of using back braces for
Scoliosis, to no avail. Her curve just kept getting worse, no matter what they tried. In 1996,
Amanda had to have Scoliosis surgery, as her curve was putting a major organ at risk.
They also did her Fundalplycation, and placed a G-Tube at this time. This surgery nearly
took her life 2 times. The first time, her heart stopped in the middle of surgery, so they
revived her, closed her up, and gave her 7 days to recooperate. The second time, they
hadn't even started the surgery, and her lung collapsed. Again, another 7 days to
recooperate. After being in the hospital 18 days, they finally were able to complete her
corrective surgery. She spent a total of 28 days in Children's hospital in Fresno, CA.
Since this surgery, Amanda never regained her ability to crawl, which was her way of
getting around.
We moved back to Reno, NV in Feb 2001, 10 years, and 3 siblings later. I had not been
able to get her back to a Rett clinic, as they were always just to far to travel for Amanda.
Since then, we have moved to Western Maryland, and loving it. Amanda has been very
healthy, up until July of 2008, when Pneumonia nearly took her life. With persistance, and
a mothers love, I insisted on finding the problem she was haiving. She had not been
eating, or drinking well for nearly a week. After 3 days in the hospital, they found
pnuemonia, and were able to get her back on track.
After 18 years since her last visit to a Rett clinic, I am happy to announce that we finally got
her in to one. Took her to Kennedy Krieger Institute, she saw Dr. Naidu, and we are very
pleased to be able to get her there. We plan on taking her back as often as we can.
Amanda seemed to be ok with the new doctor. Ironically, this is the same doctor we met
back in 1991 at a Rett Syndrome conference, where people there called Amanda the
"blonde one". I was very excited to meet her once again.
Amanda graduated in June 2009, from Allegany High School in Cumberland, Maryland. I
am so proud of her! Amanda has always been a happy girl. She has her days, just like
any of us. There are days still yet, that we are up all night together. Most of these times,
she is up having a giggle party, and other times, crying all night.
Now that I am able to take Amanda to clinic, I can only hope that someday soon, they will
find the cure we so desperately need! It saddens me that every day, Amanda has
something to tell me, but can only express her true wants and needs through those
beautiful baby blues, and cannot tell me through words.
Thank you all for coming to Amanda's website, to get to know her better. And if Amanda
could, she would thank you too. We hope you continue to help, by spreading the word
about Rett Syndrome, and donating to help find the cure.
A special thanks to
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our donors:
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