Tuesday, July 30, 2013

featured angel

Somebody was the 'Featured Angel' on the International Rett Syndrome Foundation website this month. 

(Her name is Leah.)

(You might have to scroll as they put new angels on top each month.)


Hi! My name is Leah Layton. I was born Feburary 22, 2007 in Palo Alto, California. My first year was a dream. I ate and slept so well and learned to do lots of things on my own, including saying lots of words, phrases, and animal sounds. I fed myself and loved to read books. It took me a little longer to crawl, cruise and walk, but by 26 months I was running. Around the same time I started walking, my mom and dad noticed a few words disappearing. I was enrolled in an Early Start program and Teacher Jan suggested I get tested for Rett syndrome. So I did, and our lives were never the same.

Over the next few months, Rett syndrome took my words and hand use, but it didn’t take my spirit. Mom says my smiles and giggles can still melt anyone and dad says my bright blue eyes twinkle on the darkest of days. 

When I was first diagnosed, we were lucky enough to live close to Katie’s Clinic in Oakland, CA where we received fantastic care and met some wonderful people. When I was four, dad decided to go back to school to get his MBA, so we moved across the country (I was in the car for SIX days!) to New Hampshire where he attends the Tuck School of Business at Dartmouth College. On our way, we were able to meet even more wonderful Rett families. Next month, dad is going to graduate, so we are moving again. This time, we’re just going halfway across the country where we’ll settle in the Midwest (Quad Cities, IA/IL) and look forward to meeting even more friends!!

Last May, my little sister, Kate, was born. She used to be kind of boring and just cried a lot, but she is getting to be more fun every day. And she gives me the best kisses. 

I love spaghetti and swimming, my baby sister and sunshine, playing in the snow and swinging. Kung Fu Panda is probably the best movie ever made and, with my long blonde hair, I look a lot like Rapunzel. I love Taylor Swift and have been a big fan of hers since I was two. We have dance parties daily at our house so I have some pretty sweet moves. I still love to read and some current favorites are The Magic Treehouse Series, books about horses, and fairy tales. 

I’m currently in Kindergarten where I am mainstreamed with a one-on-one aide to help me through my day and keep me safe. I love to learn and be with all my friends. I work so hard at school that sometimes I’m asleep when my mom comes to get me off the bus. I have physical, occupational and speech therapy at school and I get to ride horses once a week too!! I used to have seizures, but haven’t had any since January! And that’s a good thing because they made me really tired. For the past few months, I have been trying out some eye gaze computers too – that’s a lot of fun. 

Last month, my mom and dad ran in the Boston Marathon on Team Rett Fundracers. They didn’t get to cross the finish line (where I was waiting with my little sister and my grandparents!), but they did reach their goal of raising more than $10,000 for Rett syndrome research and they said that makes the whole experience worth it. My mom’s friend Amy also ran the New York City Marathon last fall on my behalf and raised more than $1,000 for the IRSF! 

My mom came up with the logo for the 2013 Family Education and Awareness Conference in Midway, Utah. Mom and dad both grew up in Utah, so they are excited to share their childhood home with our Rett family! Mom said “This is the Place for Hope” was a perfect logo for the IRSF conference because the people who settled Utah had hope that together, they could build a better life and future for themselves in Utah and she has hope that together, we can all build a better life and future for everyone with Rett syndrome! Our friend Laura Clarke Hawkins painted a really pretty picture of Midway with some Sego Lilies (the Utah state flower) for the conference. Sego Lilies were a source of strength and sustenance for the settlers of Utah and mom says the IRSF and our Rett syndrome family are a source of strength and sustenance for everyone who is a part of it. 

My mom and dad say they have learned lots of of patience, kindness, hard work, determination, laughter and love from me. Personally, I think they’re going to have to learn more patience from Kate. Sometimes my days are hard, but I choose to smile and laugh and know that I am blessed!


Hi! My name is Leah Layton. I was born Feburary 22, 2007 in Palo Alto, California. My first year was a dream. I ate and slept so well and learned to do lots of things on my own, including saying lots of words, phrases, and animal sounds. I fed myself and loved to read books. It took me a little longer to crawl, cruise and walk, but by 26 months I was running. Around the same time I started walking, my mom and dad noticed a few words disappearing. I was enrolled in an Early Start program and Teacher Jan suggested I get tested for Rett syndrome. So I did, and our lives were never the same.
Over the next few months, Rett syndrome took my words and hand use, but it didn’t take my spirit. Mom says my smiles and giggles can still melt anyone and dad says my bright blue eyes twinkle on the darkest of days.
When I was first diagnosed, we were lucky enough to live close to Katie’s Clinic in Oakland, CA where we received fantastic care and met some wonderful people. When I was four, dad decided to go back to school to get his MBA, so we moved across the country (I was in the car for SIX days!) to New Hampshire where he attends the Tuck School of Business at Dartmouth College. On our way, we were able to meet even more wonderful Rett families. Next month, dad is going to graduate, so we are moving again. This time, we’re just going halfway across the country where we’ll settle in the Midwest (Quad Cities, IA/IL) and look forward to meeting even more friends!!

Last May, my little sister, Kate, was born. She used to be kind of boring and just cried a lot, but she is getting to be more fun every day. And she gives me the best kisses.
I love spaghetti and swimming, my baby sister and sunshine, playing in the snow and swinging. Kung Fu Panda is probably the best movie ever made and, with my long blonde hair, I look a lot like Rapunzel. I love Taylor Swift and have been a big fan of hers since I was two. We have dance parties daily at our house so I have some pretty sweet moves. I still love to read and some current favorites are The Magic Treehouse Series, books about horses, and fairy tales.
I’m currently in Kindergarten where I am mainstreamed with a one-on-one aide to help me through my day and keep me safe. I love to learn and be with all my friends. I work so hard at school that sometimes I’m asleep when my mom comes to get me off the bus. I have physical, occupational and speech therapy at school and I get to ride horses once a week too!! I used to have seizures, but haven’t had any since January! And that’s a good thing because they made me really tired. For the past few months, I have been trying out some eye gaze computers too – that’s a lot of fun. 
My mom and dad recently ran in the Boston Marathon on Team Rett Fundracers. They didn’t get to cross the finish line (where I was waiting with my little sister and my grandparents!), but they did reach their goal of raising more than $10,000 for Rett syndrome research and they said that makes the whole experience worth it. My mom’s friend Amy also ran the New York City Marathon last fall on my behalf and raised more than $1,000 for the IRSF!
My mom came up with the logo for the 2013 Family Education and Awareness Conference in Midway, Utah. Mom and dad both grew up in Utah, so they were excited to share their childhood home with our Rett family! Mom said “This is the Place for Hope” was a perfect logo for the IRSF conference because the people who settled Utah had hope that together, they could build a better life and future for themselves in Utah and she has hope that together, we can all build a better life and future for everyone with Rett syndrome! Our friend Laura Clarke Hawkins painted a really pretty picture of Midway with some Sego Lilies (the Utah state flower) for the conference. Sego Lilies were a source of strength and sustenance for the settlers of Utah and mom says the IRSF and our Rett syndrome family are a source of strength and sustenance for everyone who is a part of it.

My mom and dad say they have learned lots of of patience, kindness, hard work, determination, laughter and love from me. Personally, I think they’re going to have to learn more patience from Kate. Sometimes my days are hard, but I choose to smile and laugh and know that I am blessed!
- See more at: http://rettsyndrome.org/news-and-media/irsf-features/featured-angel?#sthash.D0QrwXQ3.dpuf
Hi! My name is Leah Layton. I was born Feburary 22, 2007 in Palo Alto, California. My first year was a dream. I ate and slept so well and learned to do lots of things on my own, including saying lots of words, phrases, and animal sounds. I fed myself and loved to read books. It took me a little longer to crawl, cruise and walk, but by 26 months I was running. Around the same time I started walking, my mom and dad noticed a few words disappearing. I was enrolled in an Early Start program and Teacher Jan suggested I get tested for Rett syndrome. So I did, and our lives were never the same.
Over the next few months, Rett syndrome took my words and hand use, but it didn’t take my spirit. Mom says my smiles and giggles can still melt anyone and dad says my bright blue eyes twinkle on the darkest of days.
When I was first diagnosed, we were lucky enough to live close to Katie’s Clinic in Oakland, CA where we received fantastic care and met some wonderful people. When I was four, dad decided to go back to school to get his MBA, so we moved across the country (I was in the car for SIX days!) to New Hampshire where he attends the Tuck School of Business at Dartmouth College. On our way, we were able to meet even more wonderful Rett families. Next month, dad is going to graduate, so we are moving again. This time, we’re just going halfway across the country where we’ll settle in the Midwest (Quad Cities, IA/IL) and look forward to meeting even more friends!!

Last May, my little sister, Kate, was born. She used to be kind of boring and just cried a lot, but she is getting to be more fun every day. And she gives me the best kisses.
I love spaghetti and swimming, my baby sister and sunshine, playing in the snow and swinging. Kung Fu Panda is probably the best movie ever made and, with my long blonde hair, I look a lot like Rapunzel. I love Taylor Swift and have been a big fan of hers since I was two. We have dance parties daily at our house so I have some pretty sweet moves. I still love to read and some current favorites are The Magic Treehouse Series, books about horses, and fairy tales.
I’m currently in Kindergarten where I am mainstreamed with a one-on-one aide to help me through my day and keep me safe. I love to learn and be with all my friends. I work so hard at school that sometimes I’m asleep when my mom comes to get me off the bus. I have physical, occupational and speech therapy at school and I get to ride horses once a week too!! I used to have seizures, but haven’t had any since January! And that’s a good thing because they made me really tired. For the past few months, I have been trying out some eye gaze computers too – that’s a lot of fun. 
My mom and dad recently ran in the Boston Marathon on Team Rett Fundracers. They didn’t get to cross the finish line (where I was waiting with my little sister and my grandparents!), but they did reach their goal of raising more than $10,000 for Rett syndrome research and they said that makes the whole experience worth it. My mom’s friend Amy also ran the New York City Marathon last fall on my behalf and raised more than $1,000 for the IRSF!
My mom came up with the logo for the 2013 Family Education and Awareness Conference in Midway, Utah. Mom and dad both grew up in Utah, so they were excited to share their childhood home with our Rett family! Mom said “This is the Place for Hope” was a perfect logo for the IRSF conference because the people who settled Utah had hope that together, they could build a better life and future for themselves in Utah and she has hope that together, we can all build a better life and future for everyone with Rett syndrome! Our friend Laura Clarke Hawkins painted a really pretty picture of Midway with some Sego Lilies (the Utah state flower) for the conference. Sego Lilies were a source of strength and sustenance for the settlers of Utah and mom says the IRSF and our Rett syndrome family are a source of strength and sustenance for everyone who is a part of it.

My mom and dad say they have learned lots of of patience, kindness, hard work, determination, laughter and love from me. Personally, I think they’re going to have to learn more patience from Kate. Sometimes my days are hard, but I choose to smile and laugh and know that I am blessed!
- See more at: http://rettsyndrome.org/news-and-media/irsf-features/featured-angel?#sthash.D0QrwXQ3.dpuf
Hi! My name is Leah Layton. I was born Feburary 22, 2007 in Palo Alto, California. My first year was a dream. I ate and slept so well and learned to do lots of things on my own, including saying lots of words, phrases, and animal sounds. I fed myself and loved to read books. It took me a little longer to crawl, cruise and walk, but by 26 months I was running. Around the same time I started walking, my mom and dad noticed a few words disappearing. I was enrolled in an Early Start program and Teacher Jan suggested I get tested for Rett syndrome. So I did, and our lives were never the same.
Over the next few months, Rett syndrome took my words and hand use, but it didn’t take my spirit. Mom says my smiles and giggles can still melt anyone and dad says my bright blue eyes twinkle on the darkest of days.
When I was first diagnosed, we were lucky enough to live close to Katie’s Clinic in Oakland, CA where we received fantastic care and met some wonderful people. When I was four, dad decided to go back to school to get his MBA, so we moved across the country (I was in the car for SIX days!) to New Hampshire where he attends the Tuck School of Business at Dartmouth College. On our way, we were able to meet even more wonderful Rett families. Next month, dad is going to graduate, so we are moving again. This time, we’re just going halfway across the country where we’ll settle in the Midwest (Quad Cities, IA/IL) and look forward to meeting even more friends!!

Last May, my little sister, Kate, was born. She used to be kind of boring and just cried a lot, but she is getting to be more fun every day. And she gives me the best kisses.
I love spaghetti and swimming, my baby sister and sunshine, playing in the snow and swinging. Kung Fu Panda is probably the best movie ever made and, with my long blonde hair, I look a lot like Rapunzel. I love Taylor Swift and have been a big fan of hers since I was two. We have dance parties daily at our house so I have some pretty sweet moves. I still love to read and some current favorites are The Magic Treehouse Series, books about horses, and fairy tales.
I’m currently in Kindergarten where I am mainstreamed with a one-on-one aide to help me through my day and keep me safe. I love to learn and be with all my friends. I work so hard at school that sometimes I’m asleep when my mom comes to get me off the bus. I have physical, occupational and speech therapy at school and I get to ride horses once a week too!! I used to have seizures, but haven’t had any since January! And that’s a good thing because they made me really tired. For the past few months, I have been trying out some eye gaze computers too – that’s a lot of fun. 
My mom and dad recently ran in the Boston Marathon on Team Rett Fundracers. They didn’t get to cross the finish line (where I was waiting with my little sister and my grandparents!), but they did reach their goal of raising more than $10,000 for Rett syndrome research and they said that makes the whole experience worth it. My mom’s friend Amy also ran the New York City Marathon last fall on my behalf and raised more than $1,000 for the IRSF!
My mom came up with the logo for the 2013 Family Education and Awareness Conference in Midway, Utah. Mom and dad both grew up in Utah, so they were excited to share their childhood home with our Rett family! Mom said “This is the Place for Hope” was a perfect logo for the IRSF conference because the people who settled Utah had hope that together, they could build a better life and future for themselves in Utah and she has hope that together, we can all build a better life and future for everyone with Rett syndrome! Our friend Laura Clarke Hawkins painted a really pretty picture of Midway with some Sego Lilies (the Utah state flower) for the conference. Sego Lilies were a source of strength and sustenance for the settlers of Utah and mom says the IRSF and our Rett syndrome family are a source of strength and sustenance for everyone who is a part of it.

My mom and dad say they have learned lots of of patience, kindness, hard work, determination, laughter and love from me. Personally, I think they’re going to have to learn more patience from Kate. Sometimes my days are hard, but I choose to smile and laugh and know that I am blessed!
- See more at: http://rettsyndrome.org/news-and-media/irsf-features/featured-angel?#sthash.D0QrwXQ3.dpuf

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