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    • A Snowflake On the Wind



      Whispers in the Wind, do you hear them? We do, the countless voices of those who come forward with nothing more than a quiet plea for a prayer, or a moment to simply be heard.

      Runtime DNA's community is filled with the voices of so many people in need of a gentle word, a kind and caring response, a chance to say "Hey Im in need, are you there"?

      The power of community to help heal others is amazing to behold. What better way to begin a holiday season than to reach out, and reach within.

      We start this week with a member from our creative Team, "Islandgirl". Beloved by so many, take a moment to learn about her daughter, and how they deal with "Osteogenesis Imperfecta", a genetic bone disorder. Islandgirl is an amazing mother, strong, compassionate, a fierce fighter who champions her daugther's illness. She has given her life for her children, she does it joyfully and willingly and with so much love and tenderness.

      Share their remarkable journey as we begin a series in community outreach.



      "Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her life time." ~Taken from the OI Foundation site.

      In October of 2004, a day after my daughter was born, I remember being told that my daughter had OI. The doctor told me that the nurses noticed she wasn't moving her arms and legs and so they did a full body xray. She had 15-20+ fractures through out her body, including all her long bones.

      A mix of emotions overwhelmed me that day. The worst was the uncertainty of everything. Would she be able to walk? What would happen when she started to walk? How severe was it? What did this mean for her and her future??? I was scared. I was confused. I know I panicked more than once. I was afraid of not being a good enough mom to be able to take care of her. Seriously, the little everyday things had instantly become a major challenge. How the heck was I supposed to change her diaper? What was the best way to pick her up without breaking something? Clothes....I needed to find onesies that buttoned ALL the way down and needed clothes that I could get off and on her very easily. I remember literally taking every day as it came. Trying to think of the future and the what ifs was a little too much to handle at that time. I was being thrown information left and right. One day in particular was extremely hard. Before babies are discharged, at least in the hospital I was at, parents are given a class on CPR. The thought of even having to perform this on her freaked me out! I would break many bones if this was necessary! And if her bones are that much more fragile...I couldn't think of the possibilities.

      I had never heard of this condition before. At least I didn't think I had. I had seen the movie "Unbreakable" many years prior to this, but I thought it was a made up thing - something for this movie. As soon as they told me she had Brittle Bones, my mind automatically recalled this movie. Like most conditions or diseases, there are severities. They did a skin biopsy which would take some time for final results, but a preliminary diagnosis was that she was Type III moderate. Type III would be the 3rd most severe in the list. The most severe usually proved lethal at birth or shortly after. But in the OI community, those with this condition are called "Snowflakes". Each one is different even within their severities. My daughter has proven to be the exception to the rule. In the last 8 years since leaving the NICU, she has only had 4 major breaks. She walks...even runs (a little more and a little faster than I would like) and is very active. She hurts all the time, but she rarely complains. She is a natural athlete, and it saddens me that she will not be able to play many of the sports she has taken an interest in. Basketball is her favorite to play but she usually has to play alone or with a very minimal amount of friends. She is tiny for her age, but her personality more than makes up for that!

      Thankfully, with a strong group of family and friends (including those here at RDNA), I had the encouragement and support needed. She is a lot stronger than I ever anticipated but I also try not to take that for granted. She receives a treatment every 4 months through an IV that helps give her bones a little more density and helps with bone pain. We go to the Montreal Shriners once a year for a check up to make sure everything is ok, and if it's not, to be pro-active in treating whatever might be wrong. Aside from being smaller, she looks normal, and I get very strange looks from other parents when I'm constantly on her about being careful. Maybe I'm a little more over-protective than I should be. But I have been truly blessed to have been given this gift that is my daughter.

      Lora-Ly aka Islandgirl


      Comments 13 Comments
      1. nightwind's Avatar
        She sounds like a little trooper, taking it all in stride and not letting it slow her down. Great strength for a young lady of eight years. I bet she learned that from her mother.
        Being a mother I can only begin to imagine what you have been through during this time. No one can truly know how someone else feels, but we can empathize.
        You and your daughter are both truly courageous. Thank you for sharing your story. Most of us take so much for granted. May God bless you both with unbounded strength.
      1. pilothigh's Avatar
        Bless you and all your family.
      1. inspired_art's Avatar
        She is a treasure...continue to guard her as you have been. God bless!
      1. scifibabe's Avatar
        Well I am truly touched by this. All I can say is that you are a wonderful parent and truly an inspiration. Keep being there for your amazing daughter who has been through so much. Big hugs to you both. You are strong and courageous. I've heard that God gives special children to parents who will truly be there for them and love them. Your daughter is blessed to have a wonderful parent. Your little 'snowflake' is a jewel and amazing. She may not be strong in body but she sounds strong in spirit.
      1. bendinggrass's Avatar
        Thank you so much, Lora-Ly, for sharing this. I am grateful to you and your beautiful Snowflake for inspiring me, and reminding me to be always thankful.
        From here I know there is little I can say or do to make a difference, but I will keep you and your sweet daughter in my mind, and especially in my prayers.
        You are both wonderful.
        God bless you.
        Randy
      1. batronyx's Avatar
        Has it really been 8 years? Wow. I remember when you first shared this at her birth. I am so glad she is doing well. May it always continue to be so.
      1. ragraphicdesign's Avatar
        Great mom! And great little girl
        A strong hug and a wish that things proceed for the best
      1. jeanne_50's Avatar
        OMG! I didn't know it was so severe. You and your daughter were on my mind since the last contact we had and I keep sending healing thoughts towards her. I think it's only natural you're being protective over someone that's so precious. I don't know what I'd do if one of my children weren't as healthy as they are, only thanking the Lord they are.

        Love and hugs, Jeanne
      1. Islandgirl's Avatar
        I just got a chance to read this and I'm truly touched by everyone's kind words. Please continue praying for her. We have moments now that she's old enough to understand, where it really bothers her. But she quickly snaps out of it. Last Christmas was the first Christmas in 3 years where she wasn't broken and could go out and actually run around in the snow. She's learning her boundaries while testing them at the same time. LOL Thank you again for your encouraging words.

        Psssst, Jeanne, I haven't forgotten! LOL I'm sorry it's taking just a little longer than I expected. But I haven't forgotten.
      1. Admin-Syyd's Avatar
        Based on sheer will alone, she is stronger than most adults I know. She's also beautiful, smart, and has the oldest soul in a young child I've ever encountered.
      1. SndCastie's Avatar
        HUGGS to you and your daughter
      1. naniko's Avatar
        Thats just awesome!
      1. kucingdoang's Avatar
        hi admin thanks
        Good information, I like this

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