Thank you Leana

A few blog posts ago I went on and on about the Disney Marathon and shared lots of pics with you.

What I didn't have at the time was any pics of the woman, then only woman who ran in Abbys honor.

A stranger

A stranger who picked a Marathon and a cause and wanted a child, a local woman. The child she got was mine.

She fund-raised and did very well for GP2C. Especially for someone who didn't know the child for who she was running.

I am in awe of her and of all people who raise funds and awareness for causes that don't affect them personally and we all hope and pray never will.

Thank you Leana and family.

Team Sparkle runs for Rett.

Hello all. As I save before I stink at Fundraising! What a way to open a blogpost huh?

I need help from you to change all that. Im a quitter. Its terrible but I am. I like to think of it as more of a Why botherer..is botherer a word? A whole lot of hurt feelings and why doesnt anyone care comes out of fundraising for those of us that stink at it.

Truth is rich people are excellent at Fundraising because...drumroll........they have money and know people that do. Tah dah! I however have holed myself up in this house spending every waking taking in every breath of my girl. Dont cry ya big babies. Its true and its my choice. I don't make any effort to get out and about or associate with anyone outside of the special needs world. Why? Honestly it's cause I  don't like it much. When the world quit working the way I wanted to I stomped off......

But

These 6 AMAZING women are going to run 195 miles for 195 girls that suffer from Rett Syndrome. Our daughter will be represented and we have committed to raise $100 - that's just 10 people giving $10!  Who doesnt have $10? If you would like to be a part of this extraordinary event, please click on this link


Abby's GirlPower Page



I clicked on it and was shocked and a little embarrassed that their were no funds listed as given in Abbys name. Really? None. That has been a kick in my butt. I hope ya'll are reading this in this fired up southern accent I seem to be typing in....and yes Im this weird in real life!

Carrie will run mile 153 for Abby.Carrie will be around 9:15 PST - so 11:00 my or CST time on April 5th  The estimated times are based on about an 8.5 minute/mile. We will be posting pics and cheering on the runners over more than a 24 hour time span.

Team Ragnar 4 Rett

Did I mention that if our goal is reached along with the other Rett girls being represented, $20,000 will be raised and will go directly to fund continued research? How AWESOME is that!?!

Thank you all!

Abby is sleepy

Last night, at the time I didn't realize what I was getting. I knew in my head that she was tired and ready for bed but didn't realize she was telling me until I watched this right after I took it.



For a kid with a disorder that keeps her from intelligible speech and no purposeful use of her hands. This little girl just told me she was tired and wanted to go to bed!



She is so awesome! Im not the hero. She is!

AN ACCESSIBLE VAN FOR ABBY!

Dear friends ...

As you may know I have been nominated to win an adaptive van....for Abby in the National Mobility Awareness contest. I would appreciate the support by voting and sharing with your friends and family. This would change our lives greatly. Thinking of no longer having to leave Abby out because I can't lift her and her increase in safety is invaluable. The thought that my back,neck and shoulder may get a chance to actually heal brings tears.

Just a few weeks ago I had to cancel a day trip with family because I just couldn't do it. I couldn't lift her into her chair then out of her chair and into the can then have to lift the 44 pound chair into the back. It has been months since I  could do it without having to ask for help. I almost can't imagine just opening a door and rolling her into place and fastening her in. Wow that's almost how normal people live.

It just takes a minute or so and you can vote every 24 hours until May 9th. You can also share on any ANY social media you belong to!

To keep track daily join this blogs Facebook page at : Abbysworld on Facebook
To vote now or anytime go to the link below!
Thank you all so much for your continued support!
Vote for Teresa Vejrosta - Kansas City, MO in the 2014 National Mobility Awareness Month Local Hero contest!

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...

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

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