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A "survivor" of radial club hands

(4 posts)

Total votes: 1

  1. zebenne
    Member

    Hi. I am a 33 year old male. I am married with three daughters. I have two bachelors degrees (in biology and chemistry) and I work at a Cancer Genetics facility. I also have bilateral type four (apparently the most severe) form of radial club hands. While I have had to face many challenges in life, I have lived a fairly normal and active life. My mother was bragging once about me and saying, "There isn't anything you can't do." I replied, "Well, there are some things I can't do." I said, "I'm not very good at bowling and I can't play tennis." My mother laughed and said, "I can't do those things either!" I would like to offer hope and encouragement to those who are dealing, either personally or as a parent of a child, with radial club hands. We have great reason to hope and believe that we can do more than what is generally expected of us. We should never let society dictate how we are limited. Instead we should allow ourselves to determine what we can do by working it out, by utilizing our strengths, and by never giving up in the end. There is never a time when we need to feel useless, worthless, or incapable so long as we remember that we are, first and foremost, human beings. Our medical condition is just something unique about us. It is our right to decide how we define ourselves and our right to believe that we are equal and powerful members of society. :)

    Posted 1 year ago #

  2. isabelsmom
    Member

    I read your post last week. Thanks for the upbeat report. When my daughter was born with her hand differences (missing right thumb, hypoplastic pinkies, only three metacarples in her right hand, right pinkie fused to right ring finger, contractures in all hand joints) I was so worried for her but she's amazing. Two thumbs are definitely over rated. All the same, it's great to hear from someone who's been there and done that. Though I still wince at all the references to ten fingers, I expect that Isabel will conquer the universe one day. She announces frequently and proudly, "I have ONE thumb." I've often thought her confidence and spicy red headed beauty are blessings that will see her through. Your post reaffirms that. Thanks again, Margo

    Posted 1 year ago #

  3. zebenne
    Member

    Hi Margo,

    It sounds like your daughter Isabel is quite an extraordinary young lady. How old is she? Anyway, yeah, I had to laugh about how she announces that she has one thumb. :) I have only a partially developed thumb on my left hand and no thumb on my right. My only thumb is missing the bone that would normally attach it to my wrist so it doesn't actually do anything but hang there. Still, when the doctors suggested that I get it removed, I told them, "No thanks." I am sort of attached to it. :)

    I am also certain that your daughter touches the lives of many people. I am not incredibly comfortable with that aspect of being different. It gives me a sort of celebrity status that I am not sure how to take, but I am grateful that I can be a source of inspiration for others anyway. A kid once saw me when he was five or six (I was 8 or 9) and remembered me 18 years later when he saw me again while he was ringing up my groceries for me hundreds of miles away from where he first saw me. People in the town I live come up to me and tell me how they saw me doing something at some obscure moment and how impressed they were that I could do that. I am constantly being complimented on my beautiful wife and daughters by people I have never met.

    It is a unique opportunity to be able to inspire and encourage others simply by living life. It's really quite goofy when I think about it. To me, I don't feel like I am doing anything extraordinary, but other people do. They see me as limited at first, but all I have to do is just about anything and I defy their expectations almost immediately. Your daughter has the opportunity to do the same thing. It is easy to want to feel upset about all the stares, the blunt questions, and even the rude teasing that can occur because your daughter is different. I have learned, however, that when I hold my head up high, meet ridicule and skepiticism with a kindly smile, and let people stare and ask questions, then I have the opportunity to let my differences be a good inspirational, encouraging moment for others. I am especially grateful to be different when I can use my differences to help someone else, even when it really doesn't have anything to do with me, which is often the case. :)

    Anyway, take care, and thanks for sharing your daughter's differences and experiences.

    Aaron

    Posted 1 year ago #

  4. amber2010
    Member

    Hi, I don't know if you'll see this reply as it has been a year since you posted this topic, but I found your post to be really inspirational. My fiancee has Radial clubbed hands, also the most severe type, with no thumbs on either hands. He had a lot of surgery as a child, but has now decided to accept his arms the way they are, as he can do almost everything, only finding it hard to get a tight grip on things.

    However, the reason I wanted to talk to you is that you say you have three children. We've been trying for a family for over a year now, and have been told my boyfriend has fertility issues. We've looked on the internet and can't seem to find any info on whether this could be due to his disability, and if it is common in sufferers. I've been trying to contact adults who have gone on to successfully have families, and came across your post.

    I'd love to hear from you if you see this, my email is lchapman04@yahoo.co.uk

    Posted 7 months ago #

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