Click ''donate" to make an online contribution to Rett Syndrome research in honor of Annie!
Annie was born on January 6, 2005. A beautiful,
healthy, strong little girl that smiled from day one.
She was a delight, very quiet, peaceful and delicate.
At 9 months of age everything changed. Annie fell
off her weight charts, failed to meet milestones and
became very sick. She cried for hours inconsolably.
Then she had a seizure. Tests were fun and finally
at 15 months of age Annie was diagnosed with Rett
Syndrome. After the initial shock of the diagnosis
wore off and through the process of grieving we
decided to do everything we could to help Annie
acquire new skills and fight to keep the ones she
already had.
healthy, strong little girl that smiled from day one.
She was a delight, very quiet, peaceful and delicate.
At 9 months of age everything changed. Annie fell
off her weight charts, failed to meet milestones and
became very sick. She cried for hours inconsolably.
Then she had a seizure. Tests were fun and finally
at 15 months of age Annie was diagnosed with Rett
Syndrome. After the initial shock of the diagnosis
wore off and through the process of grieving we
decided to do everything we could to help Annie
acquire new skills and fight to keep the ones she
already had.
Today Annie is a happy, healthy 4 year old girl. She is
able to stand independently and walks with assistance.
She doesn’t say any words but speaks volumes with her
engaging eyes and infectious giggles. Annie loves
music, animals, people, and going for runs in the jogging
stroller but her favorite times are spent playing with her
brother and sister. Annie is in preschool 4 days a week
and attends occupational therapy, physical therapy,
music therapy, animal therapy and augmentative
communication. She has a beautiful personality and an
attitude of strength and determination. Annie teaches
us about love, patience, acceptance, hope and faith on
a daily basis. She truly is our angel.
Rett Syndrome is a devastating disease that has robbed
Annie of any sort of independence. She is not able to
run, color, sing, dance, feed herself, reach for a toy, or
tell us her needs and wants. Annie’s autonomic system
has been affected, she has trouble chewing and
swallowing and is fed through a g-tube for extra
nourishment. She has anxiety, poor circulation, severe
digestive problems, trouble regulating her breathing and
body temperature, disrupted sleep patterns and
scoliosis. Annie will need 24 hour care for the rest of
her life. Currently there are no treatments or cure for
Rett Syndrome.
Despite the grim reality of Rett Syndrome there is hope.
Research for Rett Syndrome has uncovered its cause, a
genetic mutation in the MECP2 gene. In February, 2007
researchers successfully reversed Rett Syndrome in a
mouse model. Treatment and a cure for Rett Syndrome
is now within reach. We believe that Rett Syndrome will
be the first childhood neurological disorder to be cured
but we need your help. Annie’s miracle is around the
corner, the science is there, the funding is not. Without
private funding our cure will remain decades away.
Please help us is making this dream a reality and giving
these girls a chance at life!
Annie’s A-Team! “Raising awareness to eradicate Rett”!
.
able to stand independently and walks with assistance.
She doesn’t say any words but speaks volumes with her
engaging eyes and infectious giggles. Annie loves
music, animals, people, and going for runs in the jogging
stroller but her favorite times are spent playing with her
brother and sister. Annie is in preschool 4 days a week
and attends occupational therapy, physical therapy,
music therapy, animal therapy and augmentative
communication. She has a beautiful personality and an
attitude of strength and determination. Annie teaches
us about love, patience, acceptance, hope and faith on
a daily basis. She truly is our angel.
Rett Syndrome is a devastating disease that has robbed
Annie of any sort of independence. She is not able to
run, color, sing, dance, feed herself, reach for a toy, or
tell us her needs and wants. Annie’s autonomic system
has been affected, she has trouble chewing and
swallowing and is fed through a g-tube for extra
nourishment. She has anxiety, poor circulation, severe
digestive problems, trouble regulating her breathing and
body temperature, disrupted sleep patterns and
scoliosis. Annie will need 24 hour care for the rest of
her life. Currently there are no treatments or cure for
Rett Syndrome.
Despite the grim reality of Rett Syndrome there is hope.
Research for Rett Syndrome has uncovered its cause, a
genetic mutation in the MECP2 gene. In February, 2007
researchers successfully reversed Rett Syndrome in a
mouse model. Treatment and a cure for Rett Syndrome
is now within reach. We believe that Rett Syndrome will
be the first childhood neurological disorder to be cured
but we need your help. Annie’s miracle is around the
corner, the science is there, the funding is not. Without
private funding our cure will remain decades away.
Please help us is making this dream a reality and giving
these girls a chance at life!
Annie’s A-Team! “Raising awareness to eradicate Rett”!
.
What keeps us going:
“For I will restore health to
you and heal you of your
wounds” said the Lord
Jeremiah 30:17
“For I will restore health to
you and heal you of your
wounds” said the Lord
Jeremiah 30:17
(Bridget, Annie, and Scott)
A special thanks to our donors:
Sarah Sonneberger
Lauren Johnson
The Vavrick Family
Doris Lee
Nikole Brown
Kavita Desai
Danielle Grace
Carrie McFarlin
James Sprague
Christopher and Sarah Johnson
Heather Harmon
Lauren Olivier-Brock
Sarah Sonneberger
Lauren Johnson
The Vavrick Family
Doris Lee
Nikole Brown
Kavita Desai
Danielle Grace
Carrie McFarlin
James Sprague
Christopher and Sarah Johnson
Heather Harmon
Lauren Olivier-Brock
Annie's mom Bridget, is a member of
our Mother's Advisory Board.
our Mother's Advisory Board.
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