Saturday, March 15, 2014
AN ACCESSIBLE VAN FOR ABBY!
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Saturday, March 8, 2014
Best Dressed Baby in the ICU: You know you're the parent of a medically fragile ...
A friend posted this blog on Facebook and I have to say it is the most true and applicable to our life things I have ever read.
Thank you once again family off Ella Grace for writing the words of our hearts!
Best Dressed Baby in the ICU: You know you're the parent of a medically fragile ...: - You get asked at least once a week if you are a nurse. - You have more medical supplies stockpiled in your house than a third world coun...
Thank you once again family off Ella Grace for writing the words of our hearts!
Best Dressed Baby in the ICU: You know you're the parent of a medically fragile ...: - You get asked at least once a week if you are a nurse. - You have more medical supplies stockpiled in your house than a third world coun...
Monday, March 3, 2014
Daddy change the channel
The one thing us Special Needs and Rett parents harp on endlessly is the fact that our kids are in there. They are communicating. They can hear you. You just cant hear them...because you are not listening.
She can hear her thoughts. She thinks you can too. She looked at that remote and said change the channel. Did you listen? Did you look?
Teach the way she learns...and learn the way she speaks
She speaks
Monday, February 24, 2014
New research funding puts Rett Syndrome cure on the horizon | Business Standard
Researchers from Scotland and the US are taking a step towards reversing the effects of Rett Syndrome, a debilitating genetic disease affecting very young children in large numbers worldwide.
Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders.
The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease.
This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice.
Future research will concentrate on developing similar treatments for clinical trials in humans.
Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time.
It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands.
The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems.
Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy.
See the article in it's entirety on The Business Standard Website
New research funding puts Rett Syndrome cure on the horizon | Business Standard
Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders.
The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease.
This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice.
Future research will concentrate on developing similar treatments for clinical trials in humans.
Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time.
It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands.
The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems.
Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy.
See the article in it's entirety on The Business Standard Website
New research funding puts Rett Syndrome cure on the horizon | Business Standard
Saturday, February 22, 2014
Go team!
Sometimes in my world of poor me, why me and general selfish boo hooness I forget how fortunate we really are. And as always, she finds a way to remind me.
This morning we were going through all the pictures people are posting from the Disney Half Marathon and surrounding races. Families, friends,siblings and complete strangers running on behalf of our girls. A complete stranger running in my own daughters name. For years the majority if not all of the money raised for research and awareness for our girls has come from their families. Strangers and the public taking a stand and getting involved is something of great relief for all of us.
We were talking about the great costumes, I must have a tutu and a cape....for starters. It was so fun to virtually cheer them on, covered in their GP2C gear. I started feeling it yesterday. I must be there next year. Will I run? Probably not but I will run in my heart and I will fundraise for Team Abby. I will encourage local and others to run in our name. But I will somehow challenge myself.
Looking through it all Abby was getting excited. She started to rock and verbalize, almost never words but sounds and shrieks. We had Dora the Explorer going on in the background, of course.We saw a pic of a girl with her family helping her across the line. I'm almost sure her mother had finished and then grabbed her so she could cross, but it was so moving. I literally just blew snot on the screen telling you about it.
That's when I heard it. Abby was rocking and woo woo wooing and there was a bully episode on Dora and the character said, "Roll away. " Abby shrieked "Row Away!" then turned to me and shrieked.
Big deal huh? It is. For the majority of our girls there is so sound short of a whimper when in pain.
We are lucky when it comes to Rett Syndrome. No, my daughter can't get up from a chair or couch on her own but I know a beautiful girl her age who is just now sitting up on her own. Like most girls a giggle or a whimper is all you get. . No my Abby can't talk but she does. I'm sure of it. In her mind and every once in a while it comes screaming out. When those times come I am reminded that she is trapped, she is there and I need to fight for her more.
I do get fed up and I have times where I just want to live and accept our fate. I don't want to scream Rett from the rooftops 24 hours a day. I just want to be her Mom. It's time for another round and I'm ready to fight.
Roll away Rett roll away.
The half marathon is tomorrow but there have been races and events leading up to. I will leave you with pictures but I am going to lace up my shoes and get in shape.
Ding Ding!
Ingrid. Founder of Girl Power 2 Cure and one Bad A## Superhero herself!
This is what it's all about!
See that girl on top? The first one? Thats mine!
Rockin it!
There was a time that I would have been in the middle of a pic like this. Cept I would have been rocking a tierra! Come on ladies!
This is why
Go team go!
Being the best sister ever!
Spread the word!
Amazing!
Go team!
***If you are a runner or want to be and are interested in participating next year on Team Abby please contact me at terri.vejrosta@gmail.com
This morning we were going through all the pictures people are posting from the Disney Half Marathon and surrounding races. Families, friends,siblings and complete strangers running on behalf of our girls. A complete stranger running in my own daughters name. For years the majority if not all of the money raised for research and awareness for our girls has come from their families. Strangers and the public taking a stand and getting involved is something of great relief for all of us.
We were talking about the great costumes, I must have a tutu and a cape....for starters. It was so fun to virtually cheer them on, covered in their GP2C gear. I started feeling it yesterday. I must be there next year. Will I run? Probably not but I will run in my heart and I will fundraise for Team Abby. I will encourage local and others to run in our name. But I will somehow challenge myself.
Looking through it all Abby was getting excited. She started to rock and verbalize, almost never words but sounds and shrieks. We had Dora the Explorer going on in the background, of course.We saw a pic of a girl with her family helping her across the line. I'm almost sure her mother had finished and then grabbed her so she could cross, but it was so moving. I literally just blew snot on the screen telling you about it.
That's when I heard it. Abby was rocking and woo woo wooing and there was a bully episode on Dora and the character said, "Roll away. " Abby shrieked "Row Away!" then turned to me and shrieked.
Big deal huh? It is. For the majority of our girls there is so sound short of a whimper when in pain.
We are lucky when it comes to Rett Syndrome. No, my daughter can't get up from a chair or couch on her own but I know a beautiful girl her age who is just now sitting up on her own. Like most girls a giggle or a whimper is all you get. . No my Abby can't talk but she does. I'm sure of it. In her mind and every once in a while it comes screaming out. When those times come I am reminded that she is trapped, she is there and I need to fight for her more.
I do get fed up and I have times where I just want to live and accept our fate. I don't want to scream Rett from the rooftops 24 hours a day. I just want to be her Mom. It's time for another round and I'm ready to fight.
Roll away Rett roll away.
The half marathon is tomorrow but there have been races and events leading up to. I will leave you with pictures but I am going to lace up my shoes and get in shape.
Ding Ding!
This is what love looks like!
To learn more about Girl Power 2 Cure click here GP2C
To purchase items you see in this blog click here GP2C STORE
To donate or get involved click here GP2C Get Involved!
Saturday, February 15, 2014
Abby can danceydance!
Last night Abby was on a roll. She was dancing and giggling and likes she does, she wanted me to sing every song and dance with her. I sat down next to the tv so she could still watch and her nurse got this video. So honored that I get to live in HER world where everything is Happy and she is surrounded by nothing but joy and love.
Friday, February 14, 2014
New research funding puts Rett Syndrome cure on the horizon | Business Standard
I woke up this am to find the most amazing news. We are on our way...and as we sometimes forget....there is hope.
Researchers from Scotland and the US are taking a step towards reversing the effects of Rett Syndrome, a debilitating genetic disease affecting very young children in large numbers worldwide.
Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders.
The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease.
This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice.
Future research will concentrate on developing similar treatments for clinical trials in humans.
Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time.
It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands.
The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems.
Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy.
They eventually hope to develop treatments capable of reversing or preventing the symptoms of the disease meaning that sufferers will be able to lead relatively normal lives.
........
read entire article and fascinating news for our girls below
New research funding puts Rett Syndrome cure on the horizon | Business Standard
Researchers from Scotland and the US are taking a step towards reversing the effects of Rett Syndrome, a debilitating genetic disease affecting very young children in large numbers worldwide.
Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders.
The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease.
This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice.
Future research will concentrate on developing similar treatments for clinical trials in humans.
Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time.
It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands.
The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems.
Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy.
They eventually hope to develop treatments capable of reversing or preventing the symptoms of the disease meaning that sufferers will be able to lead relatively normal lives.
........
read entire article and fascinating news for our girls below
New research funding puts Rett Syndrome cure on the horizon | Business Standard
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