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Independence for Brayden

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We are trying to get Brayden a power chair.  She currently can not get out of bed, go get a snack, or even play with toys without us taking her to her play table.  She depends on her Poppy and I to help her with all of these everyday activities that most five year olds can do for themselves.  Joe and I both would do anything in this world for her but we also want to teach her and allow her to do for herself.  That is a big part of self worth and she truely wants to do things for herself.  Anyone who has been around her for even a few minutes knows that she is one determined little girl.  

 The therapists and doctors at Shriners Hospitals for Children — Greenville know that Brayden can have much more independence, but she needs a new wheelchair to achieve this goal. She currently has a manual chair that we have to push her in.  We worked hand in hand with Brayden's doctors and therapist to document everything that Brayden would need to make a power chair fit her needs and allowed her the independence to get around in her environment at home and at school.  She is finishing up the 4 year old class and will start Kindergarten in the fall.  We want her to be able to roll into school on her own and participate without her one on one aid having to be right behind her.  I want her to learn that she doesn't have to ask if she can play or go to the window to look out at the birds.  It makes me sad everytime she asks permission to do something that she should just be able to do.  The necessary accessories that allow her to be independent make this a custom power chair and we knew it was going to be a fight.  I was willing to fight till the end and we did.   The insurance company denied the chair the first time and we decided that we would make a video of her using a regular power chair and then the custom chair.   We filed again and sent in the DVD and hours of documentation and the chair was still denied because they said it was not "  Medically neccesary".  I'm not sure how making independent transfers is not medically neccesary but that is all it takes for a denial.  They also informed us that they had no way to watch the DVD so it was not even taken into consideration.   Really a big insurance company and you don't have a way to watch a DVD.  It was then sent to an outside company to review the case that had no money interest in the denial.  They came back with an approval.   Brayden does need a 
power chair but he ( doctor that did the review) did not think that she would ever be able to transfer independently on her own.  During the video her therapists were right next to her and he felt like she needed some help.  She had only been in this loaner chair for less then an hour and she did complete her transfers.  She was slow and had to figure out a way but she DID DO IT and she will get better.   While using the Permobile K450MX Brayden is able to independently get in and out of the chair, she can raise and lower herself to the floor, reach items on tables and shelves, and play on any level with her friends.

Unfortunately the cost of a custom power wheelchair is expensive, and with insurance only covering the basics, we need your help with getting Miss Brayden her independence. 

Brayden came to live with us in late 2013.  She was diagnosed at birth with Arthrogryposis Multiplex Congenita (AMC). Arthrogryposis is a non-progressive muscle disorder causing stiff joints and an overall lack of muscular development. Children with AMC are born with a deformity of the joint and a limited range of joint motion. All of Brayden’s joints are affected.  Brayden has already had four surgeries since 2013 and has two major surgeries on her knees coming up at the end of this year which will require me to be out of work any where from 6 to 9 months.  Joe and I are in the process of making our house accessible for Brayden and her new power chair.  We bought a used handicap accessible van last year when we started the paperwork for the power chair. 

Brayden amazes us and inspires us each day. She has figured out how to adapt and overcome many obstacles that most doctors thought she would never accomplish.  We never doubted her for a minute and know in our hearts that God has a special plan for her and we will be right by her side cheering her on.
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Donations 

  • Rachel Roman
    • $100 
    • 8 yrs
  • Cash donors
    • $1,480 (Offline)
    • 8 yrs
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Organizer

Dawn Dame
Organizer
Westminster, SC

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