Click ''donate" to make an online contribution to Rett Syndrome research in honor of Avery!
Avery was born via C-section on 07.08.06 after 41 weeks and 2 days-She wasn't
ready to come out! But we were so ready to meet her. I'll never forget my husband
telling me: "it's a girl!" We were so overwhelmed-with love and anxiety but she was
an easy baby. She rarely cried and was very independent from the beginning.
Because we were first time parents it wasn't until Avery was about 8-9 months when
we first noticed she wasn't meeting her developmental milestones. Her pediatrician
told us she was fine. We weren't really ready to accept anything was wrong at the
time so we didn't get her started with PT until she was 16 months. After 4 months
she was walking. She had SMO's for a while but no longer needs them. We had
some genetic testing that came back normal in spring of 2008. Rett was mentioned
but she didn't seem to "fit" in that category so we put the test off. She was evaluated
by EI in June 2008 and was denied. We got her re-evaluated in November of 2008
and she qualified. She received PT, OT and Speech through EI from Jan 2009-June
2009 and now receives services through our school district. She started at her
special ed preschool on 8.31 (M, T, Th, F 8:30-12:10) where she continues to
receive all services. She also continues to attend her "regular" preschool in the
afternoons (stared there when she was 2). We are so very lucky she has a wonderful
school program and we see progress every day! Avery's favorite part is the school
bus!! Just prior to her starting school, right around her third birthday we noticed her
repetitive hand movements. Deep down I thought it was Rett syndrome-but I ignored
it. Chalked it up to a sensory thing. Our neurologist felt differently and suggested it
might be time to test for Rett. I was devastated. I think I cried for 2 days straight and
we hadn't even done the blood work!
ready to come out! But we were so ready to meet her. I'll never forget my husband
telling me: "it's a girl!" We were so overwhelmed-with love and anxiety but she was
an easy baby. She rarely cried and was very independent from the beginning.
Because we were first time parents it wasn't until Avery was about 8-9 months when
we first noticed she wasn't meeting her developmental milestones. Her pediatrician
told us she was fine. We weren't really ready to accept anything was wrong at the
time so we didn't get her started with PT until she was 16 months. After 4 months
she was walking. She had SMO's for a while but no longer needs them. We had
some genetic testing that came back normal in spring of 2008. Rett was mentioned
but she didn't seem to "fit" in that category so we put the test off. She was evaluated
by EI in June 2008 and was denied. We got her re-evaluated in November of 2008
and she qualified. She received PT, OT and Speech through EI from Jan 2009-June
2009 and now receives services through our school district. She started at her
special ed preschool on 8.31 (M, T, Th, F 8:30-12:10) where she continues to
receive all services. She also continues to attend her "regular" preschool in the
afternoons (stared there when she was 2). We are so very lucky she has a wonderful
school program and we see progress every day! Avery's favorite part is the school
bus!! Just prior to her starting school, right around her third birthday we noticed her
repetitive hand movements. Deep down I thought it was Rett syndrome-but I ignored
it. Chalked it up to a sensory thing. Our neurologist felt differently and suggested it
might be time to test for Rett. I was devastated. I think I cried for 2 days straight and
we hadn't even done the blood work!
A special thanks to our donors:
Nancy LaBelle
Christine Himes
Regina Lucas
Melaina, Owen & Rich Conroy
Lia Tremblay
Tom, Sandi, Matt and Claire Bessey
Barbara Benton
Michael Raysor
Traci Corcoran
Charlie Robertson
Linda, Mike, Lillie, & Elizabeth Justice
David Parker
Maria Moore
Nancy LaBelle
Christine Himes
Regina Lucas
Melaina, Owen & Rich Conroy
Lia Tremblay
Tom, Sandi, Matt and Claire Bessey
Barbara Benton
Michael Raysor
Traci Corcoran
Charlie Robertson
Linda, Mike, Lillie, & Elizabeth Justice
David Parker
Maria Moore
On November 9th, 2009, after I had convinced myself the test would be negative we
received the news that she had tested positive for Rett Syndrome. We were shocked
and sad but mostly relieved. We now know what we are up against and are going to
fight it every step of the way. We have a large group of amazing and supportive
friends and family who all care about our special little girl as much as we do. This
journey with her has given us a new perspective on life and the importance of things
most take for granted. Avery has a determined spirit and tries so hard. She has
made incredible progress with walking and continues to improve (can walk up two
stairs without holding on!). She also tries so hard to communicate-she has about
10-15 words. She loves to be in the pool, push her baby stroller, look at magazines,
eat anything and everything, dance, be with her friends at school, ride the bus and
knock over her 13 month old brother! She has the best giggle, gives great hugs and
has an amazing dimpled smile that melts our heart about a hundred times a day.
We are so ready to get involved in raising awareness about Rett Syndrome and
getting a cure found!! We want to do anything and everything we can. Exciting
research is happening right now but needs funding, please help us by donating in
Avery's honor! Thank you for visiting Avery's page. If you would like to know more
about our family visit our blog at www.therobertsonstoday.blogspot.com
received the news that she had tested positive for Rett Syndrome. We were shocked
and sad but mostly relieved. We now know what we are up against and are going to
fight it every step of the way. We have a large group of amazing and supportive
friends and family who all care about our special little girl as much as we do. This
journey with her has given us a new perspective on life and the importance of things
most take for granted. Avery has a determined spirit and tries so hard. She has
made incredible progress with walking and continues to improve (can walk up two
stairs without holding on!). She also tries so hard to communicate-she has about
10-15 words. She loves to be in the pool, push her baby stroller, look at magazines,
eat anything and everything, dance, be with her friends at school, ride the bus and
knock over her 13 month old brother! She has the best giggle, gives great hugs and
has an amazing dimpled smile that melts our heart about a hundred times a day.
We are so ready to get involved in raising awareness about Rett Syndrome and
getting a cure found!! We want to do anything and everything we can. Exciting
research is happening right now but needs funding, please help us by donating in
Avery's honor! Thank you for visiting Avery's page. If you would like to know more
about our family visit our blog at www.therobertsonstoday.blogspot.com
LISTEN TO THE MUSTN'TS
Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me --
Anything can happen, child
ANYTHING can be.
~Shel Silverstein
Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me --
Anything can happen, child
ANYTHING can be.
~Shel Silverstein
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