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Friday, October 3, 2014

#Readers For #Retts Awareness: Meet Amanda and her family!


***Thank you so much for letting us take over your blog today for Readers for Rett's Awareness! Before we get started, to all your wonderful readers.
 Our Event, Readers for Rett's Awareness, is being held on Facebook here.

We have three wonderful girls and their families who were able to take the time out of their crazy schedules to let us take a peek into their lives. We also have some wonderful sponsors who have donated awesome prizes for each of the girls to give away AND a grand prize. The contests will be open until Sunday, October 6th at midnight, so please feel free to come join us! Meet the girls, learn about Retts, and have some fun at the same time!***


Hi! My name's Aimee.  My friend, Rae, and I wanted to help spread awareness about Rett's Syndrome and introduce people to girls and their families who live with it every day. (To find out more about Rett's Syndrome click here and check out our event.) Please also understand that because of the debilitating effects of Retts the girls are unable to answer directly for themselves. So their family has been kind enough to answer for them. 

I'd like to introduce Amanda and her family!


Ronna what is a typical day like for your family and Amanda?

A typical day lately has been hospital stays. But, since we have been home, it is waking up, singing with her fav tv shows, tickling game and playing kissy with her Big Time Rush pillow. Also changing her, getting her dressed (not an easy task with her limbs being so tight), getting her up in her chair (again not easy because of her body being so tight), setting up her feeding pump and hooking her up for the day (24/7 but bag that is changed each morning). When I push her out to the living room I end up doing her hair while she watches tv and try styling it all while she moves around like crazy. We sing, play and watch tv, We take some time out several times a day to work with her and her MyTobii communication device. She plays games on it, tells me what she would like to do sometimes and keeps turning it off. Once we are worn out from daily activities, we either do a bed and bath or shower, which is very difficult without a hoyer lift. Then we get her dressed, hair brushed and back in bed, and hooked back up to her feeds. Then we go to bed. 

If there was one thing that you really wish you could tell people about Amanda or about your family and how Retts effects our family, or just about your family in general what would it be?

Amanda was a quiet baby. But as she grew, she started doing thing quite early.  Such as: sitting up on her own, rolling over, and even speaking 2-3 word sentences.  When she was 14 months old she had her first seizure.  She also stopped talking and regressed back to babbling and cooing. At the time she was merely diagnosed with Autism and CP, however almost two years later doctors realized she had been misdiagnosed and returned with a diagnosis of Retts Syndrome.  At this point she began a multitude of tests and got her first wheelchair. All before turning 4.
Over the next ten years she went through multiple surgeries and almost died twice during them. She also had a bought of Pneumonia that almost took her life in 2008. However she also got three siblings and even graduated high school. She was finally able to get a MyTobii and using it is now able to express herself.  Through it all she has remained positive and loving.

What is Amanda's service dog's name? What breed of dog is she? How does she help Amanda?

Amanda's service dog's name is Violette. She is an American Cocker Spaniel and really is still in training. I have been training her since we got her at 3 months old. She helps to let me know when Amanda is in distress. (Her doing this since last year was a big surprise, and I hadn't trained her for that). She helps Amanda by being her bff. She calms her by being around her. Since she finally is home, Violette has actually settled Amanda's anxiety down. The anxiety was something new to us because of her thyroid. When she starts having an anxiety fit, her dog comes close to her and she literally calms down a little. Hard to explain unless you see it. Lol.  Violette will be 4 years old in November.

I know sometimes people are unsure of what it is ok to say or ask when they meet Amanda, or other children with Retts or other disabilities in public. How would you prefer people to react? Is there anything you wish they would ask? Anything you wish they wouldn't?
I am quite open to any question, and prefer people to just ask rather than stand back and stare or just sit and wonder.




Thank you so much Ronna and Amanda  for answering all my questions and letting us get a look into your lives. To get to know more about Amanda and her family come stop by the event and say hi!


3 comments:

  1. Spaniels are great love able trustworthy dogs!! Thanks for sharing

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    Replies
    1. Thank you for stopping by! :) I love dogs too, but my cat won't let me get one.

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  2. It really helped a lot to have a dog. They helped us to heal,learn more and cope..

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