Click ''donate" to make an online contribution to Rett Syndrome research in honor of Ilah!
Ilah was born at home, fat and happy in April 2002. She was a very easy baby. It seemed all
she did was nap and giggle, and her giggle is infectious. She developed a little slower than the
norm until about 15 months. By 18 months, she was still not walking, talking or pointing so we
had her evaluated by a developmental pediatrician and enrolled her in ECI.
Just before her 3rd birthday, her doctor finally had her tested for Rett and it came back positive.
The outlook seemed bleak - the only literature provided to us were printouts taken from the
IRSA website. Three weeks later we attended the International Rett Syndrome Conference. We
were particularly inspired by Dr. Susan Norwell and Karen Erickson who spoke of always
presuming competence and teaching our daughters to read, as well as the families who spoke
of growth potential, learning and educational development that is possible for these girls.
Thankfully, they confirmed what we had always known about Ilah - that she is bright and has the
capacity to learn like her peers.
Ilah is now 6 1/2 and in an absolutely fantastic kindergarten/Life Skills class. She is learning to
communicate using her Dynavox V-Max, and is walking further distances in her gait trainer all
the time. Her smile lights up the room, and her giggles are still infectious. She loves to read
books and watch TV. Ilah is the second of four children and is adored by everyone, especially
her new baby brother. Fortunately, after much contemplation, she has decided she likes him,
too:) Ilah is very cuddly and loves to give hugs and kisses to anyone who will accept them.
Rett Syndrome has been called the "Rosetta Stone" of neurological diseases. It was the first
such disorder to be identified specifically down to the gene. Scientists believe that curing Rett
Syndrome can unlock the doors to finding a cure for many other neurological disorders such as
Autism, Schizophrenia and Alzheimers. That should place it at the forefront of research and
development but few people know about it. We still encounter doctors and specialists who have
never heard of RS.
she did was nap and giggle, and her giggle is infectious. She developed a little slower than the
norm until about 15 months. By 18 months, she was still not walking, talking or pointing so we
had her evaluated by a developmental pediatrician and enrolled her in ECI.
Just before her 3rd birthday, her doctor finally had her tested for Rett and it came back positive.
The outlook seemed bleak - the only literature provided to us were printouts taken from the
IRSA website. Three weeks later we attended the International Rett Syndrome Conference. We
were particularly inspired by Dr. Susan Norwell and Karen Erickson who spoke of always
presuming competence and teaching our daughters to read, as well as the families who spoke
of growth potential, learning and educational development that is possible for these girls.
Thankfully, they confirmed what we had always known about Ilah - that she is bright and has the
capacity to learn like her peers.
Ilah is now 6 1/2 and in an absolutely fantastic kindergarten/Life Skills class. She is learning to
communicate using her Dynavox V-Max, and is walking further distances in her gait trainer all
the time. Her smile lights up the room, and her giggles are still infectious. She loves to read
books and watch TV. Ilah is the second of four children and is adored by everyone, especially
her new baby brother. Fortunately, after much contemplation, she has decided she likes him,
too:) Ilah is very cuddly and loves to give hugs and kisses to anyone who will accept them.
Rett Syndrome has been called the "Rosetta Stone" of neurological diseases. It was the first
such disorder to be identified specifically down to the gene. Scientists believe that curing Rett
Syndrome can unlock the doors to finding a cure for many other neurological disorders such as
Autism, Schizophrenia and Alzheimers. That should place it at the forefront of research and
development but few people know about it. We still encounter doctors and specialists who have
never heard of RS.
A cure for RS is not just about curing
my daughter Ilah. Curing Rett can
help so many others suffering with
neurological disorders. Finding the
cure will happen. You can help by
donating to research and telling
everyone you know about this
potentially curable disorder.
my daughter Ilah. Curing Rett can
help so many others suffering with
neurological disorders. Finding the
cure will happen. You can help by
donating to research and telling
everyone you know about this
potentially curable disorder.
A special thanks to our donors:
Clyde Gilbert
Krisi Raymond
Daniel Zeigler
Arroyo Seco Wine Company, Inc.
Russell and Diane Motz
Clyde Gilbert
Krisi Raymond
Daniel Zeigler
Arroyo Seco Wine Company, Inc.
Russell and Diane Motz
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