Click ''donate" to make an online contribution to Rett Syndrome research in honor of Hannah!
"Hannah was born in Tokyo, Japan while my husband was working there in March, 2005. She
was 7 weeks premature and low birth weight. The doctors told us she would catch up by her
second birthday. We started early intervention of physical therapy at 12 months. By 19
months Hannah was walking and at 2 years old she had as many if not more words than other
children her age. But at 2 1/2 I noticed that while other children had less words, they could
form sentences with them while Hannah was still using one and two word phrases. She had
other struggles as well so we took her to many specialists and ran every test we could think of.
She received many different diagnosis's but nothing really seemed to fit. I kept adding
different therapies to address the challenges Hannah faced.
By the time she was 3 years old she was jumping on a trampoline, walking unaided up and
down the stairs, could say up to 6 word phrases and feed herself with a fork. We were so
proud of our Hannah! Then, at 3 years, 3 months, Hannah began to change. She dropped
from 6 words phrases down to one word utterances. She stopped jumping, walking up and
down the stairs and feeding herself. She constantly wrung her hands, she began a pattern of
holding her breath and hyperventilating. She gagged on food. She lost weight. She collapsed.
We took her to the ER where she was finally diagnosed with Rett Syndrome.
It has been a very hard few months for all of us since this time. Our hopes for Hannah went
from her "catching up" to hoping that she will be able to feed herself and have a conversation
with us one day. But through her ongoing therapies, working with her every day, and
Hannah's fighting spirit, she can finger feed and is working on eating again with a fork. She
relearned how to chew. She can walk up and down stairs, jump and has many words back.
She is not quite to where she was, but she tries so hard. Hannah is a total love. She gives
sweet kisses that are like heaven. She is social, loving and funny. Hannah loves music.
Especially the early Beatles. Eight Days a Week and Love Me Do are her favorites. She likes
to watch The Wiggles and loves being read to. Hannah also enjoys her horse-riding therapy,
swim therapy, music therapy and really all her therapies! We make it fun for her. She also
attends pre-school with a companion 4 days a week. In December we took our family skiing
and Hannah got up on skiis! We couldn't believe it. Go Hannah!! The adaptive ski instructor
was amazing too.
Hannah has an older sister, Jennifer who is 6 years old. Jennifer is so good to her little sister.
She loves singing to her and reading to her and once in awhile they actually "play" together. I
am blessed that Hannah is able to communicate with words. She can't converse but can say
words to make most of her needs/wants known and I realize how blessed we are that she can
do that, as most girls with Rett Syndrome cannot. But the reality is that without a cure, Hannah
will have to be taken care of for the rest of her life. We are adamantly searching for a cure for
our daughter and all the girls afflicted with this disease. Thanks for visiting!"
was 7 weeks premature and low birth weight. The doctors told us she would catch up by her
second birthday. We started early intervention of physical therapy at 12 months. By 19
months Hannah was walking and at 2 years old she had as many if not more words than other
children her age. But at 2 1/2 I noticed that while other children had less words, they could
form sentences with them while Hannah was still using one and two word phrases. She had
other struggles as well so we took her to many specialists and ran every test we could think of.
She received many different diagnosis's but nothing really seemed to fit. I kept adding
different therapies to address the challenges Hannah faced.
By the time she was 3 years old she was jumping on a trampoline, walking unaided up and
down the stairs, could say up to 6 word phrases and feed herself with a fork. We were so
proud of our Hannah! Then, at 3 years, 3 months, Hannah began to change. She dropped
from 6 words phrases down to one word utterances. She stopped jumping, walking up and
down the stairs and feeding herself. She constantly wrung her hands, she began a pattern of
holding her breath and hyperventilating. She gagged on food. She lost weight. She collapsed.
We took her to the ER where she was finally diagnosed with Rett Syndrome.
It has been a very hard few months for all of us since this time. Our hopes for Hannah went
from her "catching up" to hoping that she will be able to feed herself and have a conversation
with us one day. But through her ongoing therapies, working with her every day, and
Hannah's fighting spirit, she can finger feed and is working on eating again with a fork. She
relearned how to chew. She can walk up and down stairs, jump and has many words back.
She is not quite to where she was, but she tries so hard. Hannah is a total love. She gives
sweet kisses that are like heaven. She is social, loving and funny. Hannah loves music.
Especially the early Beatles. Eight Days a Week and Love Me Do are her favorites. She likes
to watch The Wiggles and loves being read to. Hannah also enjoys her horse-riding therapy,
swim therapy, music therapy and really all her therapies! We make it fun for her. She also
attends pre-school with a companion 4 days a week. In December we took our family skiing
and Hannah got up on skiis! We couldn't believe it. Go Hannah!! The adaptive ski instructor
was amazing too.
Hannah has an older sister, Jennifer who is 6 years old. Jennifer is so good to her little sister.
She loves singing to her and reading to her and once in awhile they actually "play" together. I
am blessed that Hannah is able to communicate with words. She can't converse but can say
words to make most of her needs/wants known and I realize how blessed we are that she can
do that, as most girls with Rett Syndrome cannot. But the reality is that without a cure, Hannah
will have to be taken care of for the rest of her life. We are adamantly searching for a cure for
our daughter and all the girls afflicted with this disease. Thanks for visiting!"
A special thanks to our donors:
After Hannah's regression I taught her to jump again
by moving her hips up and down on the trampoline to
her favorite music. She doesn't jump nearly as much
as she used to, but she can still do it! Here she is with
her big sister. - Hannah's Mom
by moving her hips up and down on the trampoline to
her favorite music. She doesn't jump nearly as much
as she used to, but she can still do it! Here she is with
her big sister. - Hannah's Mom
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