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IRSF Needs YOUR votes!!

What is IRSF? It is the International Rett Syndrome Foundation.

What is Rett Syndrome? A unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. It is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.”

Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 to 23,000 female births. It is a developmental disorder. It is not a degenerative disorder. It causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as hand-washing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.

Rett syndrome is confirmed with a simple blood test to identify the MECP2 mutation. However, since the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both. It can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.

Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community. 1

IRSF is in the running to win a $250K research grant from the Pepsi Refresh Project. This grant could mean $500K for Rett Syndrome due to a generous matching gift grant from the Pioneer Fund of Colorado. Research has shown that symptoms of Rett can be reversed in a mouse model. IRSF is targeting research funds to discover, develop and test new drugs to treat and reverse Rett Syndrome. The research is too promising to not fight for this grant!

We need YOU to be a Rett Hero today and help IRSF win $500,000. Make it your goal for the next 10 days to get 10 new people a day committed to vote daily. VOTE EVERYDAY and SHARE!

There are three ways to vote, everyday (You can vote ALL THREE WAYS everyday):

  1. Text a vote: Send 100842 to Pepsi @ 73774 (you should receive a thank you text; standard text messaging rates apply)
  2. Vote with FACEBOOK: @ http://www.rettsyndrome.org/pepsi (Click on the VOTE link, go to lower left corner and click “Sign In,” click and complete “Log in with Facebook,” click “Vote for this idea” and then sign out.)
  3. Vote with the Refresh Site @ http://www.rettsyndrome.org/pepsi (Click on the VOTE link, make sure you sign in, click “Vote for this idea,” then sign out.

SEE THE FACES OF RETT SYNDROME

Links to other Rett sites:
Girl Power
, Girl Power Blog, Rett Girl, Rett Girl Blog, Rett Help, Rett Syndrome

PLEASE REMEMBER TO VOTE EVERYDAY!

Bonus: Win an iPad– sign up for the daily email reminders and vote for IRSF every day! If IRSF wins the $250K, your name and email address will be entered into a drawing for a chance to win an iPad!

Spread the word. Click on any of the SHARE options below!

1Quoted from IRSF

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Saturday is here! WOOT!

I want to share with you this very special video of a very special little girl. Rylee, 10 years old, is the daughter of a friend of mine and is, I belive, a true natural talent. Her daddy is a vocalist in a Christian quartet (a very good quartet!) and has been for many years. Rylee has obviously taken on some of her daddy’s traits… and exhibits her own talent here in this video. Please listen and LIKE the video. And leave her a comment? She LOVES getting comments! We’d also be greatly appreciative if you could snag this video and post it on your own blog, for your own readers to view and comment!

 

Oh oh oh, and in other news… I HAVE A NEW BLOG! I know you’re thinking ‘huh?’ but it’s true! I do. It’s a recipe blog. I LOVE to cook. And I have collected many many many recipes over the years from family, friends, and a rather large collection of cookbooks. I’ve even written a few recipes myself. I want to share these recipes with YOU! See over there in my side bar.. there’s a new RSS Feed titled It’s Supper Time! That’s it! I’ll be adding a lot more recipes over there today, and then will add at least one each day. For all you health conscious folks… keep in mind these are the recipes are from Southerners, so they’re not going to be the most healthy of recipes. But they sure do taste good! ;) I hope you’ll visit my little recipe blog, and bookmark it so you can come back! (Or you can just check back here everyday because the feed will pull to my sidebar!)

Ohhh and one more thing… I just want to say hello and thank you to my new readers. And I want to tell ALL of you that I appreciate you more than you know and even though I don’t ‘know’ you, I love you all! You are the reason I sit at my computer everyday and share my life!! You’re AWESOME!

I’ll post today’s 30 DOT and 365 photo later today. Right now I have a devotional and some recipes to work on! :)

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Hello Monday… how are you? Why are you back so soon?

WHAT happened to the weekend?  I closed my eyes for a split second and *POOF* Monday was here.

mgmon

If you’re new to my blog, then hello and welcome.  I’m participating in Meet and Greet Monday, for the first time… and I’m going to take advantage of it just a bit.  I read a story that has been on my mind; that has me feeling so angry, upset, sad, and dumbfounded all at the same time.  And on this Meet and Greet Monday, I really want to share it with you.  It’s a story that needs to be out there… needs to be exposed… needs to be read by every.single.mother! Could this really happen?

This was posted by Mir (Woulda Coulda Shoulda) and written by Hollis Gillespie (Shocking Real Life).  Please read it.

QUOTE Hollis Gillespie via Mir:
As a divorced parent, I sometimes think I’ve seen it all. For one, I thought there were only two worlds when it came to child-custody; the regular one in which we operate daily, and this other total toilet spin of rules and bureaucratic turd pellets referred to as family law. But at least in that second world the rules are fairly followed. But recently I discovered this whole other third world. Consider it a dwarf planet of pure courtroom nuttiness, where all the rules exist but they’re ignored. This is where the Ohio court case Brown vs. Elliot resides, and you’re not gonna believe this*:

201 It began one day last March when a young mother named Amanda Elliot, 27, went to retrieve her three-month-old from her babysitter, April Brown, 46. Only instead of giving the baby back to her mother, Ms. Brown informed Mandy that she had gone to court that morning and petitioned for emergency custody of the baby. “Wow,” you may think, “what a crazy squirrel that babysitter is.”

But it appears as though even a crazy squirrel can find a crazy nut every once in a while. And it turns out that the Ohio Miami County magistrate actually granted the petition for custody, based, it seems, mainly on Ms. Brown’s contention that the child had too much pet hair on her clothes. So, in short, there actually exists among us the possibility that your babysitter can just decide one day to take your kid to family court, concoct a story that isn’t even that compelling (since when is pet hair grounds to have your child removed from your custody?) and walk away with a court order that literally gives her your baby. [Click here for more details of Mandy's case.]

It would be one thing if Mandy was a bad mother. But at this time there is no evidence that Mandy Elliot has never had a complaint levied against her at DFACS or by the police or by any other Child Protective Service or, for that matter, by any party whatsoever, let alone Ms. Brown. The mother has never been convicted or even accused of any drug-related activity. She has two other children and has no criminal record. I’m told that Ms. Brown, on the other hand, does have a police record, and her husband who shares the same address with her has been convicted of criminal child abuse.

Seriously, if you were the extremely forgiving type, you could almost forgive this magistrate and figure it’ll all be dropped the minute Mandy gets a lawyer to point out that the mother is an upstanding citizen, right? But Mandy did get an attorney, a non-profit victim’s advocate named Kimberly Kislig**, who immediately filed an appeal to return custody of the child to its rightful parent. But get this, appeals like this traditionally go before the same magistrate who made the original decision, and this magistrate – based on no legal reason (again, pet hair?), and with the competent albeit very distraught mother standing right there before her — upheld her decision. So presently, this newborn has been separated from its mother going on four months now. The babysitter, Ms. Brown, often doesn’t even allow the mother her court-allotted visitation. This mother, Mandy, has done nothing to merit the removal of her child into the custody of another. The case, Brown vs. Elliot, is slated to go before a higher court in mid-September.

Again, and I apologize for repeating this, but there is no legal reason for Ms. Brown to have custody of this baby over its mother. It is not legal for the court to give your baby to someone else just because that person showed up there and said she thought the baby had too much pet hair*** on her clothes. Remember, this is not a custody battle between a mother and a father, or even one between a parent and a relative. This is a custody battle between a mother and some person who is not related to the baby in any way. Unlike Ms. Brown, though, Mandy is poor. Unlike Mandy, Ms. Brown has a high-priced attorney. Mandy is battling an established bias against her, as mystifying and without merit as that may be, and it takes time, dedication and money for court fees to fight that. So please help Mandy by contributing to her cause or by linking to this story and to Mandy’s donation page. Hopefully it will bring this absurdity to light so it might never happen again. Thank you. I mean it. Seriously. Thank you for doing what you can to help keep the world from devolving into a big awful wad of rubber stamps, bureaucrats, their bad decisions and the children damaged by them.

*All of the accounts in this story are true so long as the truth can be trusted to my own personal recollection and not that of anyone else’s.
** Full disclosure, this is my little sister, otherwise known as “The Good Sister” in my books.
*** Mandy does not even own a pet. END QUOTE.

Please go read this story.  Go visit Mir’s site (Woulda Coulda Shoulda) and leave your comments.  Donate if you can.  Spread the word.  Contact the media.  Anything you can do to help.  I know some of you are going to be skeptical, I was too.  BUT, read the comments to this at Mir’s blog (Woulda Coulda Shoulda).  There is information there to help you verify the validity of this case, and this story.

When I put myself in Mandy’s shoes (as best I can), my heart breaks.  I can NOT fathom being kept away from my baby.  I can not fathom the pain she must be feeling– her own child doesn’t seem to recognize her anymore.  My heart would be shattered if someone took my child from me— absolutely shattered.  I WOULD BE INCONSOLABLE!!!

There are so many mom bloggers out there… and so many of those bloggers get national attention, not only by their readers but by the media as well.  Why can’t we all spread the word about this case?  Maybe it’ll get national media attention… maybe, just maybe, the magistrate will feel the pressure and justice will actually prevail.

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Will you stay or will you go?

I’m hoping for the latter.   I know many of you will go, and that’s okay.  I understand.  But I truly hope you will stay, and read on- to the end.

As far back as I can remember, I have always been a passionate individual.  When I believe in something, I believe with everything in me.  When I jump on board something, I don’t do it half-way.  Sometimes I take on too much because of this, and end up feeling dazed and confused, but eventually it all works out.

Those of you who know me personally know the crosses I’ve had to bear.  You know the struggles I’ve had to face and you know the pain it has caused me.  You know how hard it has been to deal with the reality of my past- from childhood to early adulthood.  Even today, I struggle with the weight of it all.  BUT, this struggle is what has made me who I am.  These events that have been with me for so many years have molded me into the passionate person I am today.  I’ve made mistakes- some small, some large, some catastrophic- but these mistakes don’t define me.  They are not who I am.  The things that have happened to me- things beyond my control- don’t define me.  They are not who I am.  The way I’ve handled these things- events, mistakes, tragedies- the lessons I’ve learned and brought with me does define me.  This is who I am.

I’ve had to learn forgiveness the hard way- one of the hardest ways possible.  True forgiveness.  Not just empty words; but true and pure forgiveness.  That is something I couldn’t do on my own.  It’s in my nature, just as it is in everyone, to hold grudges; to harbor anger and resentment; to hate.  To truly forgive and let go of all those emotions is humanly impossible.

In the midst of all the bad that has plagued the majority of my 36 years is hope.  Light.  Something that has changed me from within- not my personality; not the passion that has emerged from tragedy- that is who I am and that remains the same.  My heart has changed.  My mind has changed.  My life has changed.  I have been given the strength to forgive, truly forgive, and that forgiveness has opened my eyes to a much brighter world.  I have found a peace that I never knew existed.  I have found more passion than I knew was possible.  Some days I am filled with such happiness that I could shout it from a mountain top; scream it out for the whole world to hear.  Of course some days are a little dimmer, because I still have my crosses to bear.  But I no longer have to go it alone.  I don’t have to fear the darkness anymore because I know the darkness will never come again.  I am finally, truly, free to live and to hope and to love.  And that is a powerful thing!

If you’re still reading, I sincerely thank you and hope you will continue on…

I am just a person.  A person who messes up; who says the wrong things at the wrong times; who is sometimes too lazy to get dressed or brush my hair; who cries at sappy commercials; who laughs at jokes five minutes after they’ve been told; and who thinks deeply and loves sincerely.  I’m not wise or witty; I’m not good at giving advice or taking my own.  I’m a person who sometimes changes her mind about something an hour after making a decision.  I’m overweight and I’m a smoker.  I’m a serious procrastinator and I sometimes run from responsibility.  But it’s okay.  Because I am loved for who I am, just the way I am.  And I know this for a fact.

I read this poem I’m about to share with you some 6 months ago or so; it has been on my refrigerator ever since to serve as a reminder that it is okay to be who I am, and that it’s no accident…

You are who you are for a reason.
you’re part of an intricate plan.
You’re a precious and perfect unique design,
Called God’s special woman or man.

You look like you look for a reason.
Our God made no mistake.
He knit you together within the womb,
You’re just what He wanted to make.

The parents you had were the ones He chose,
and no matter how you may feel,
They were custom designed with God’s plan in mind,
And they bear the Master’s seal.

No, that trauma you faced was not easy.
And God wept that it hurt you so;
But it was allowed to shape your heart,
So that into His likeness you’d grow.

You are who you are for a reason,
You’ve been formed by the Master’s rod.
You are who you are, beloved,
Because there is a God!

by Russell Kelfer

When I read that, I cried.  I cried because it was at that moment that my life long question- Why me?- had been answered.  I cried because it was at that moment I realized that nothing I’d done mattered- He still loved me.  I cried because I’d wasted so many years being hurt and angry, and not knowing who I was really angry with.  I cried because for the first time in my life, I felt like I mattered.

I sat down and prayed that day; I prayed that God would take my pain away, and I thanked Him for making me who I am.  I thanked Him for not turning His back on me when I turned my back on Him.  And I cried some more, because I had turned my back on Him.  That night, I slept more peacefully than I ever have.  I didn’t lie there in the dark worrying about the next day; worrying about things I had no control over or worrying about things in the past I couldn’t change.  I simply… slept.

I didn’t realize until a few months later, when someone who sees and talks to me pretty regularly mentioned, that I had changed. I wasn’t the same person as I had been a few months earlier.  I don’t know if the change was gradual or near-instant.  I don’t know because I didn’t notice.  I knew I felt better, inside.  I knew I wasn’t as angry or as easily angered.  But I didn’t realize to what extent I’d changed until someone pointed it out.  The more I thought about it, the more I realized it was true.  And apparently this person wasn’t the only one to notice.

This change wasn’t my doing.  I don’t have that kind of power or control.  I was the same person for 35 years.  I don’t have the ability to change myself that drastically in a matter of a few months.  Only God has that kind of power.  Only the Master who created me can change me to such an extent.  And He has.

I’m not going to try and convince you to believe in something you don’t; and I’m not going to try to change you.  I don’t have that kind of power either.  I am going to wish for you to feel what I feel, however.  And I’m going to share something that I wish, HOPE, for everyone…

Life was filled with guns and war and all of us got trampled on the floor.
I wish we’d all been ready.
Children died, the days grew cold.  A piece of bread could buy a bag of gold.
I wish we’d all been ready.
There’s no time to change your mind.  The Son has come and you’ve been left behind.
A man and wife asleep in bed
She hears a noise and turns her head he’s gone.
I wish we’d all been ready.  Two men walking up a hill, one disappears, and one’s left standing still.  I wish we’d all been ready. There’s no time to change your mind.  The Son has come and you’ve been left behind. The Father spoke, the demons died.  How could you have been so blind? There’s no time to change your mind.  The Son has come and you’ve been left behind.

I hope we’ll all be ready.

Recorded by dc Talk, written by Larry Norman.

If you’ve stayed with me till then end, then I thank you from the bottom of my heart.  You are loved, never doubt that, ever.

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