A Note to the Monster.

To the monster- the mayhem- that's hit our family like a tornado hits a little Kansas town.

to the evil-the horrible- that thinks it can get our spirits down. well FYI? it doesn't work.
to you rett syndrome, yes you.

while you bring us wheelchairs and hospitals and worries galore you also bring us a strength we never thought possible. when you bring is seizures and sleepless nights and tears beyond the norm you also bring us a bond so tight nothing can come between it.

to you rett syndrome.

the robber who takes the muscles of the little girl. you think you'll break us this time with the chair and the wheels but you haven't. try again.

the thief who stole her words. you think were in your trap with the nonverbal pain and unexplained sadness but you don't. well just keep fighting.

to the selfish one who gives her seizures and pain just to watch her struggle to eat, drink, breathe. live. I dare you to sit there and watch as we fight for her. because you're just adding fuel to the fire my dear rett syndrome. and that's a bad idea.

we are a family that fights together.
a love that never ends.
a strength that doesn't give up.
a hope that doesn't stop. not ever.

Not even when our dreams are shattered like glass.

Or our when our worst fears are coming true.

so I dare you to sit there and watch while we work to rid of you. to end the struggles and suffering. not only for our little girl but for the thousands of others out there. ao that next time she can look in the face of another child and say 'i got through the bad and I know you will too'.

so that some day shell have a chance to run though sprinklers or yell at her mom. so that shell have a chance one day to let her guard down. to stop being strong.

you just wait rett syndrome because a day will come when those scientists look at you with a sparkle in their eye and say "take THAT you horrible disease!". someday someone will receive a diagnosis of rett syndrome for their daughter and breathe a sigh if relief because you will be the disease with a cure.
and as for those girls you've caused pain and suffering? they'll become advocates for the others in their situation. they'll hold seminars and tell  everyone of the horrors you caused them to be trapped in their bodies. you'll become extinct and never cause another innocent girl any pain. Ever.

I guarantee that someday you rett syndrome wont even have a grip on those scissors youve been using to cut chromosomes.

so take that rett syndrome because after everything weve been though were still glowing with hope like the sun.

you won't take her. break her.

you won't shake us or shame us because the tables turned rett syndrome.

we. have you beat.

Thanksgiving!

Happy almost Thanksgiving!

Almost time for turkey, potatoes, cranberry sauce, and most importantly-family.

the definition of Thanksgiving Day on dictionary.com is 'a national holiday celebrated as a day of feasting and giving thanks'

So what are you thankful for?

This year I'm thankful for my whole life. The people in it, the abilities I have, my family, friends, house, everything. If you asked me to explain every single thing im thankful for youd be bored to tears by the end! So today ill just focus on ONE. I am thankful for Rett Syndrome. Obviously not for the body stealing, seizure causing, monsterous side of Rett, but more like the influence its had on me.

Im thankful for the people that have the same mission as I do, the cure.

Im thankful for the ones ive met and enjoyed the company of their lovely and adorable daughters and sons (even if the year before it was FREEZING)

Im thankful for the person ive become. A couple years ago I would have watched this(http://vimeo.com/31038459) video, said AWH and moved on. But yesterday I watched it and struggled to hold back tears. Ive seen the little things in life matter most and that I should appreciate the things I can do.

Im thankful for the researchers that work day in and day out for the cure (SOO CLOSE).

And last but not least, im thankful for miss emma

who has been strong through the seizures, regression, frustration. Through Rett Syndrome. Dont worry emma gem, pretty soon youll itll be your turn to play with the doll house, to play tag, etc...

did you know that you can make that 'soon' even SOONER!? These bracelets make FABULOUS christmas presents for family and friends. Got a daughter that wants to give presents to EVERY single one of her friends this holiday season? Well these bracelets are fun, cheap, and for a good cause. So order them today! Email braceletsforrett@yahoo.com with your 2 colors per bracelet and wrist size (small, medium, or large.)

have a GREAT thanksgiving!

Smile. Laugh. Love.

Did you read that? It says "Someday everything will all make perfect sense. so for now laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason."

Its true.

because someday everything will make perfect sense. Someday youll look back to the past and think "remember when things were bad?" and then youll be sad for a minute as you remember how you had lost all those dreams for that little girl. How  you went through so much. and then youll be happy as you think of youre life at the mmoment and watch your daughter (a rett syndrome survivor) as she runs through the sprinklers and lives the childhood she had lost.

But right now while you wait do those things. "laugh at the confusion" dont look at her and think Why did rett syndrome choose her? laugh at her contagious smile. laugh when she laughs. laugh at the innocence you use to have. just laugh.

"smile through the tears"even though youre crying at the unfairness of it all smile while you think of how its going to be once theres a cure. smile as you think of how much fun shell have once her legs learn to work. just smile.

because someday itll all be okay. everything happens for a reason. Rett Syndrome is making you stronger. Its making you have hope. Be optimistic. All these things are happening for a reason.

A tribute to Livvy

Whos your hero? Most kids my age will say celebrities like Taylor Swift or Lady Gaga. But for me its not like that. When ihear the word hero I think Emma. And then my mind goes to a little girl that I never got to meet but has touched me in a way like no other.

Olivia Georgia Meredith.

Olivia, better known as Livvy had Rett Syndrome. She went to play in heaven three years ago to the day. Livvy lived in the UK with her mom, Sara, and dad and three sisters.

It may sound weird to a lot of people but ive truly been inspired by this little girl that I never met and only heard of about a year ago. I found livvys site (http://livvyssmile.com/) last winter when I was researching up on Rett Syndrome. I simply typed “Rett syndrome girls” into google and went to the bottom of the page and clicked on the last entry and Livvys Smile popped up. I went a little further onto the Livvys Smile website and found myself amazed at the strength of this little girl. I mean ive seen strength before but it was shocking. As Abraham Lincoln said “And in the end its not the years in your life that count. Its the life in your years” and Livvy surely had a full life.

I think little Livvy was a major turning point for me. When I found her I realized that there needs to be a cure and im going to play a part in it. I found Livvys mom on twitter and her blog http://www.walkingwithangels.co.uk/ and was blown away by the stories and strength in this family.

So today on the 3 year anniversary of the day Livvys body went to heaven I write for her. Livvy is one of my many heros. She has secured her place in my mind and heart forever. Even though Livvy isnt physically on earth her legacy and soul continue to touch many.

Thank you Olivia Georgia Meredith, for being so strong. For being such an inspiration.

Help us find the cure so that all little girls have a chance to run and play and sing before they meet god.

Buy a bracelet, Find us on facebook (braceletsfor Rett), Follow us on twitter(braceletsforett), Share this blog, Consider a donation.

And today while you do that, think of Livvy.

GirlPower2Cure

Hey guys!!!

I just want to start off saying i hope you all had a wonderful week and a super Halloween!

Tonight i write a special thank you to some amazing families Ive met for being so inspirational. They each have a beatiful daughter with Rett Syndrome and came all the way up to the Adirondacks for our Rockin for Rett 3.0 benefit. Such an amazing experience! Check out the slide show of the event HERE! So thank you to the Shuberts, The Budds, the Sullivans, the Burns, Jamieson and daughter Jordan, Mike and daughter Emma, and Kelly Butler.

Kelly Butler is the cofounder of the beyond amazing Girl Power 2 Cure. This awesome organization was founded in 2006 as a place to help raise funds and awareness and also bring support and hope to families dealing with Rett Syndrome. Let me tell you something, GP2C has brought sooooooooooooo much hope its unbelievable. The power of the families involved is incredibly inspiring.

(a flower of hope)

GP2C does a "Story of the Week" where they share stories of hope and awareness. For example my adorable little cousin Sarah has been Story of the Week for her campaign Pennies for Rett! and guess whos story of the week this week!? Thats right!! MMEEE!!!!!!(: I want to thank GP2C for birnging awareness to this blog/organization and for bieng amazing!(:
(Read the story HERE!)

I hope all you readers that came over via GP2C buy a bracelet! They make the PERFECT holiday gift for a friend or family for ONLY 4 dollars!!! We have TONS of colors to chose from to suit anyone! get your own and email braceletsforrett@yahoo.com with your 2 favorite colors and wrist size (small medium or large) and well get back to you! Thanks for visiting and have a GREAT weekend!

**Click on the blue words and go to different websites!