Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year.
Maggie has lost her speech.
Maggie’s arms & hands have Parkinson’s like tremors.
Maggie hasn’t lost all hand function, but she has lost enough.
Maggie’s right hand constantly wrings so she wears a glove to protect herself.
Maggie’s left arm constantly hits her face, so we brace it to protect her.
Maggie has had a few Rett Episodes, which are similar to seizures but not seizures.
Maggie has GI issues.
Maggie’s body temperature has a hard time regulating.
Prone to respiratory infections.
Visual sensory processing disorder
Sensory processing disorder, proprioceptive and vestibular.
Maggie has Global apraxia, which is difficulty with motor planning. Motor planning incorporates every motor skill. Walking, climbing, eating, playing,etc.
Maggie can still walk, run, jump, follow directions, smile, laugh, play, swim, climb and eat by mouth.
Everyday she works hard to keep the skills she hasn’t lost and to regain those that she has.
And Maggie is considered mild for Rett
This past year, Rett did progress. Maggie lost more hand function, we are a moment away from full loss of function. Maggie now drools more often and has tongue thrusting. She now has more anxiety. She has breathing problems, holding her breath for short periods of time and hyperventilating with regularity. Maggie has also had several seizures, right now they correlate to when she is sick. Her right arm is also very stiff – which may be the beginnings of dystonia…tbd
This is Maggie’s Rett and what she deals with everyday. These are other symptoms typical of Rett that Maggie does not yet have. But as it progresses, we may have to deal with them as well.
Scoliosis, fragile bones
Impaired Cardiac problems, potentially causing sudden death
Difficulty walking, leading to wheelchair
From the moment we get up to the moment she falls asleep, we help her fight for her skills. Maggie is a fighter! Rett keeps knocking her down, but she gets back up. This is why we fight for her. For a cure.
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month?
I had grandiose plans, but am glad I’m more or less just a participant in a number of events. Awareness doesn’t end at the end of October, but it can begin today if you’re looking for ways to help. Maybe you’ll change your Facebook profile picture to a purple icon or a Rett logo. Maybe you’ll participate in a stroll-a-thon, or a Rett golf tournament. Maybe you’ll just hug your little ones a little tighter this month. Maybe you’ll find a way to donate if you haven’t. Or maybe you’ll consider tweeting the list below, provided courtesy of Girl Power 2 Cure for the next 31 days:
However you choose to get involved during Rett Syndrome Awareness week is likely more than you’ve been involved in the past – so we’re already spreading awareness. You’re already helping – there are already more people involved this year, then there were last year…as in you guys. Just by being a part of our journey, the word is spreading. Hopefully soon, when it’s cured, we can all stop talking about.
31 Tweets – October is #RettSyndrome Awareness Month – share this flower to help
A little girl is diagnosed with #RettSyndrome every 90 minutes. gp2c.org
Can’t speak. Can’t walk. Can’t use hands. But you know everything going on around you. It’s #RettSyndrome. gp2c.org
It’s #RettSyndrome awareness month. Girls living trapped unable to speak or use their hands. Hear their stories. girls.gp2c.org
October is not just for #breastcancer awareness. Women are suffering debilitated their whole lives with #RettSyndrome.
Have you seen these cool Purple Cards? 60,000 more people learned about #RettSyndrome this year. BE NEXT. www.girlpower2cure.org/how-to-help/thepurplecard
Baby girls are born “normal” but begin to lose motor skills between the ages of 1-3 years old. It’s #RettSyndrome.
#RettSyndrome is caused by a single gene mutation that leads to underproduction of an important brain protein.
#RettSyndrome is the leading genetic cause of severe impairment in girls- most cannot speak, walk or use their hands. gp2c.org
Despite physical disabilities, girls with #RettSyndrome are functioning mentally at a much higher level than previously thought.
What is as prevalent as Cystic Fibrosis, ALS and Huntington’s but you have not heard of it? #RettSyndrome. It’s a girl thing.
#RettSyndrome has been reversed in the lab and could be first curable neurological disorder. gp2c.org
Why retweet this @GirlPower2Cure flower? It is always in bloom with hope & positive energy. Join me in fighting #RettSyndrome.
Need a challenge? Try one day in my shoes. #rettsyndrome girls.gp2c.org
Friendship isn’t about who you’ve known the longest. It’s who walked into your life, said, “I’m here for you” and proved it. #girlpower2cure
Expectations. Have them. Rett Girls can do amazing things. #rettsyndrome #girlpower2cure #physicaltherapy
Not all superheroes wear capes! #girlpower2cure #rettsyndrome
Believe in the power of believing in yourself! #rettsyndrome #girlpower2cure
I think I can, I think I can, I think I can….I know I can #rettsyndrome #girlpower2cure
Look into their eyes and hear what they are not saying; because of #rettsyndrome their eyes speak louder than their voices ever will.
In honor of #rettsyndrome awareness month, I am rockin’ the @GP2C flower and you can too! https://secure.girlpower2cure.org/np/clients/gp2c/giftstore.jsp
1:10,000 doesn’t seem like many but if it’s YOUR child, it’s too many” #rettsyndrome
There’s real hope for a cure. #rettsyndrome #gp2c gp2c.org
I know a girl that puts the “rett” in pRETTy. Actually I know lots of them, let me introduce you: http://girls.girlpower2cure.org/
Rett Girls might not fly or leap buildings with a single bound…but they sure are SUPER HEROES to me! #rettsyndrome gp2c.org
What can girls with #RettSyndrome do? Amazing things! WATCH: http://www.youtube.com/rettwecan.
Love this video! Makes me want to put on my dancing shoes and raise awareness for #RettSyndrome. http://www.youtube.com/watch?v=0KcK-Y7hs-4#t=19
I’ve met some amazing girls with #RettSyndrome. I invite you to take a moment to meet some of them. http://girls.girlpower2cure.org/
I’ve covered a lot of miles this year but so has @GirlPower2Cure. Join me in their fight against #RettSyndrome. gp2c.org
How can you help a girl with #RettSyndrome? Give them a voice and get involved! http://www.girlpower2cure.org/how-to-help/volunteer.aspx
Closer than ever to a cure. Hundreds of thousands girls & women can be saved. Join our fight against #rettsyndrome. gp2c.org