Thursday, January 15, 2009

Our first little lovebug, Anna


On January 27, 2004, Jason and I were blessed with a beautiful little girl. Everything seemed as perfect as I hoped it would be. Most people don't prepare themselves for the possibility that medical issues can sneak into the picture, but that is what happened with us. Anna is perfect all right, but she did come to us with a very serious medical condition called mitochondrial disease.


When she was five weeks old she began having small seizures and thus the long, arduous process of tests, tests and more tests began and lasted for several months. We visited a pediatric neurologist who steered us to a geneticist in the Atlanta area. This geneticist, Dr. Fran Kendall, wanted Anna to have a muscle biopsy as a final attempt to figure out what was causing the seizures. When Anna was 8 months old the biopsy results came back to show that Anna has mitochondrial disease, complex 1. In short, the mitochondria in her body don't produce enough energy for everything to work as it should. Depending on the location of the defect in a specific person's mitochondria, the symptoms can vary widely. Researchers are finding out more about mitochondrial disease including the likelihood that it's related to other major diseases such as Parkinson's, Alzheimer's and even autism. For more information on this disease go to www.umdf.org.


In Anna's case, her defect has resulted in seizures, developmental delays and sensory issues. We're fortunate that overall she's been medically stable and she keeps progressing. She's a very happy little girl and she loves going to pool therapy and music therapy. The seizures are difficult to handle but we do the best we can.
Many times it's difficult to juggle the various therapies and the fact that Anna's prognosis is unknown is sometimes hard for me. But Anna has also bestowed unexpected gifts upon us. It's easy to love the child who sails and excels, but for the child who struggles the depth and quality of love ends up being breathtaking. Anna has stretched me the furthest and taught me the most. She has taught me about bravery and perseverance, strength, grace and humility. When I look at her I see the courage of a fighter and the heart of a hero.

4 comments:

  1. She is a beautiful little girl...as is her mother's love for her. I can completely related to what you describe about the child who struggles....the quality of love is indeed breathtaking....a perfect description!

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  2. Dear Gwen and Jason,

    Thanks for sharing your life experience with me and others. Yours is a beautiful heart-I know first hand as I have watched you raise Anna with such love and devotion. We are so excited for the impending trip to go get Julia and bring her to her new home in the US. We-like you-already love her and can't wait to meet her!

    Blessings!

    Gloria Talley

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  3. That is a beautiful post. Anna is a beautiful little girl and will be a great big sister to Julia! I hope you get your LOA quickly!
    Marcy
    CCAI WCP

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