National Day of Prayer for Rett Syndrome!

The National Day of Prayer for RETT is a facebook event that invites you to pray where you are, anywhere, anytime on Dec. 9!

Do you believe in the Power of Prayer? If so join us as we come together praying for our girls, our families, our researchers, and believing for our CURE. Join us as we storm the heavens for the sake of our children and watch God move in 2011!

"Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18:19-20

On Thursday, Dec. 9 we are asking for everyone that believes in prayer to pray for Rett Syndrome. There is power in prayer and there is power in numbers. We believe that if we all come together and believe that we will see God move on behalf our children. What better time than just before the new year when our research to our treatment and cure is so close. We want this message to reach across the world, just think how powerful it will be to have hundreds or thousands of people on their knees for Rett Syndrome. Pass this invitation on to all Rett parents, family and friends, churches and prayer groups, anyone who believes and will truly pray on this behalf. Are you a believing person but not sure how to pray? We will have a prayer for you that you can use to pray on Dec. 9. Want to spend extra time in prayer? We will have scripture verses that you can meditate on. Do you have a child who is particularly sick and suffering? Give us her name, we will have a list and will pray for these girls specifically.

“Yet, LORD my God, give attention to your servant’s prayer and his plea for mercy. Hear the cry and the prayer that your servant is praying in your presence.” 2 Chronicles 6:19

This event has grown to almost 600 strong! Imagine 600 people on their knees for Rett Syndrome all in the same day! God is working on this event and I pray that everyone who reads this will join us. Check out our facebook event page HERE and commit to pray with us.

Thankfulness

It's no surprise that the Holidays can sometimes bring a bit of sadness for some people and I think I speak for all parents of Rett kiddos when I say that this time of year is definitely bitter-sweet. I'm pretty sure that's why God has chosen this time to cheer us right up and give us something to hang on to during this time. That something is RETT research breakthroughs!!!!

The first got us closer to understanding MECP2 (the gene that when skewed causes Rett Syndrome) and it's role in GABA cells: Read the article and see video HERE. Dr Huda Zohgbi's lab was responsible for this finding, watch a short video of her thoughts HERE.

Next, Alysson Muotri of UCSD published an interesting paper in the journal Cell. Click HERE to see how he has made cell lines from skin biopsies of kids with Rett. The cell lines can now be used as a platform to screen for drugs. And an interview with Dr. Muotri can be found HERE

Amazing research that just brings us closer and closer to our cure. A huge thank you to my friends and family who continue to support our efforts to fund the research that will one day cure our Annie. We are in a good place, Annie continues to stay strong, she's still very young, she's learning more and more every day and our hope for a cure continues. I can't wait for the day when we get that phone call - I can just imagine our doctor calling with the news of a treatment and we will start the healing process, the process of getting our sweet Annie back and the joy of watching her go through her milestones for a second time. We wait and hope and pray.

Annie's New Language!

Annie has had her ECO 2 eye gaze computer now for about a month. She is doing amazingly well with it. She is still learning all of the symbols and what they mean and how to navigate through the pages to say what she wants to say. But everyday we get some really good, really appropriate conversation from her. I have to say that this computer has been life changing and it has the potential to bring Annie so much freedom, so much expression, so much personality and so much hope! We are not taking a second of it for granted!

Here is a video of Gracie, Annie and I talking about Annie's day at school (sidebar - Gracie's tiny voice is soooo adorable, she say's "wild turkey's" like 3 times and I've never heard those words sound cuter - I know, I'm her mom, but seriously..... OK enough). This is something we do every day. I take a look at the note that Annie's teacher wrote home about Annie's day at school and then I ask her questions so I know her talk isn't random.

If this video is not working please go here

The other day I was feeding Annie lunch and she wasn't eating (of course). She was in front of her computer but not saying to much when she started throwing a huge fit. I knelt down next to her and asked her what was wrong. She continued to scream and looked down at the floor rather than her computer. I know that it's not the popular opinion to "force" girls with rett syndrome to communicate, or to really "force" them to do anything - they have severe apraxia of their entire body and typically want to do things but literally can't get their brains to give those signals to their body to perform an action. I do get that but I also don't feel like I'm doing Annie any favors by caving in to every tantrum that she throws and I am very confident in her ability to communicate. Soooo, I told her that she had a way to communicate and if she wanted me to help her she would have to tell me what's wrong - she pulled my hair (for a kid without any hand function she's able to pull hair really well!). I walked away and let her continue screaming. After a few minutes her screams calmed a bit and I went back up to her and asked her again what was wrong, I was showing her the symbol for "I have to go to the bathroom" the symbol for "hurt", the symbol for "I have to lie down" all the things and are typically at the top of my list when Annie throws a fit. She started screaming harder than ever and rocking so hard I had to put my hand on her back to keep her from hurting her back against the chair. I managed to scream over her that I could not help her until she told me what was wrong no matter how long she screamed. She stopped, looked at me, then looked at her computer, navigated her way to "I'm finished" and then stared right into my eyes as if looks could kill. I turned off the computer, grabbed her, hugged her, smothered her with kisses and told her that she was the smartest little girl on earth! She had told me that she was finished communicating - (which can be VERY exhausting). And that communication was validated as her, Gracie and I started playing a game and Annie's fit completely subsided. YES!! The rest of the day was rough, Annie threw 2 or 3 (or 15 - who can keep count) more fits that day that I couldn't figure out, but we figured out THAT one and that is a huge deal!! I'm hopeful for a day when I have a quiet house (and still have kids in it :) A day when Annie is so good at her computer that we only see the fits that are "typical" for kids her age not the minute by minute uncertainty and the feeling that she could just loose it at any minute. It's not that I blame her, I always tell her that if I were her I'd be screaming too but for her to have some peace, some say in her life, is the most wonderful blessing!

A different kind of Pain

I remember when Annie was first diagnosed with Rett Syndrome. I remember the way I cried. I had cried lots of times before then, for things like bad grades, being "unfairly" grounded by my parents, arguments with friends, break-ups with boy friends, the loss of my grandparents, lots of crying in my, then, 28 years. But when Annie was diagnosed I remember sobbing, uncontrolably, a whole body shake. I had never been more terrified in my life. I had never been more heartbroken. The pain of your child hurts worse than anything else in the world. I remember those tears continued to fall for 11 whole months, every single day (except the day Gracie was born, I remember THAT day I was crying happy tears of joy), the terror, the shaking, the tears, and then 1 day it all stopped. I'm not sure what it was, I was still heart broken but there came a point when I just couldn't cry anymore. Oh, don't get me wrong, I still cry, lots of times, just not every day. What's interesting to me is that when I cry about Annie it's still that same, take your breath away, inability to stop, drop to your knees kind of cry. A saddness that has cut so deep that it won't ever go away. It seems to come up whenever something changes in Annie's life, I go back to that moment of diagnosis and think how long it's been, how much longer will it be before she comes back to me and dear God why in the world are you allowing this? One day that question will be answered and I believe 1 day there will be so much joy, a joy that we've never felt before, a joy so great that we will completely forget about all the tears, a joy that will completely fill up that cut that was once so deep. A joy that will never go away. I'm dreaming of that day, and each moment that passes we get closer and closer. "For I will restore health to you and heal you of your wounds, said the Lord". God always keeps his promises, I just wish he would fulfill that promise right now.

James Challenge Update!

James made a pledge to earn $100 durring the month of October for Rett Syndrome Research. Gracie ended up helping him with the challenge and together they worked their tails off doing chores. They met their goal and exceeded it raising $133.46 for their sister and all the girls with Rett Syndrome! Read the full story here

This mommy couldn't be any more blessed!