Added: 3 years ago
From: beverlyhansetburch
Views: 6,418
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  • geat job

    candace hearrell

  • Thank you!

  • You go bonnie she is so cute

  • Thank you! I need to film her again as she is now using not just two walking sticks(forearm crutches but she HATES the word crutch) but rather a cane and a walking stick. At Shriners she is practicing just with one cane! and sometimes two canes! I am SO excited. She is quite driven. I love her so much she works so hard!

  • Your Bonnie is so great! I'm so sorry you have to contend with ignorant people who don't understand or even appreciate how wonderful your daughter is. I don't have AMC but I know a person with a similar disorder. I have nemaline myopathy, it's a form of muscular dystrophy. I'm glad you share your videos with all of us! <3

  • She seems very independent for her age.

  • She's adorable (:

  • I love this one bev.. I love even more of the fact that she is so stubborn and didn't want to back for the pony ribbon lol..she's so funny

  • Her chromosomes are normal. Now, they are always studying the human genome more and more. So maybe she'll have testing before having kids.

    Anyway, I know many people with arthrogryposis that have kids that are not affected. Almost all are not affected. There are a handful of genetic ones.

    Would you please share with us what university you got your genetic training at? I am quite curious.

  • Are you a geneticist? As ACTUALLY her form of arthrogryposis is caused by my having two uteruses. My eldest son was in one. He is fine. Second son was born early as he was at lower end of both. He is fine. Third son was in other. Her, she was in BOTH. We lost her triplet sisters but she survived.

    She didn't have room in utero to move due to her position. I found this out at 23 weeks 5 days pregnant. We then made sure she didn't have anything else via amnio. She didn't.

  • Hey, someone remind me to block that person. I would do it now but I am hoping 'it' will read what I had to say. I am quite angry and don't need to deal with *insert bad words/karmas here*

  • @beverlyhansetburch i'm sorry but if she will ever be able to have her own children, there is a huge risk that the kid will have the same terrible "Gods gift". it is about the genes..

  • Actually your mental issue must be genetic. NO it is not genetic. And for your information, my 23 year old son, 22 year old son, 20 year old son... all fine, including my 2 week old grandson.

    My daughter's type of arthrogryposis is NOT genetic. Nice way to jump to conclusions. I have some fine words but you are not worthy of even them!

  • now thats genetical. hope these parents will not make anymore children

  • she's wonderful

  • Aww I wish I could go to Philly. No money this year. I want to meet you too and thanks for the kudos. Yeah I have always been a function girl. I am also lazy LOL so she has to be independent... know what I mean?

  • Beverly: Are you coming to Philly for the AMCcon? I hope so, I can't wait to meet you all. I most admire that you all let Bonnie do it her own way (including using her head to pull herself up--something I do myself) without worrying "how it looks." She's a tough kid and someday will value the freedom y'all have given her to be independent. I don't know about others, but it's quite clear to me that she's EXTREMELY communicative. Y'all are doing an awesome job!

  • Yes. Bonnie has the Vantage Plus and uses it WHEN she feels like it LOL. She really wants to speak orally and gains words every day.... and odd enough, most people can understand her. Mama and Papa are down though, more, me, hi, bye...

  • Is her speech affected too? Have you given any thought to augmentive communication devices? I work with a girl who has CP and her device has done wonders for her communication ability.

  • Please tell Bonnie that we are very proud of her, and to keep up the great work. Thumbs up to mom and dad.

  • NO! This is not a poor thing moment. This is a hard fought, self independent moment. We are grateful to God and everyone that has helped her achieve this.

    She gets better daily. Stronger daily.

  • aww poor thing

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