• About Katie

    March 2010

     

    Katie Rose, was born on April 14, 2008.

    Her parents were so excited …a girl – after five boys!!

    They noticed that her upper lip was puffy and took her to the doctors at least a half dozen times. They told them not to worry that she just had cute pouty lips.

    At 11 months old her lip started getting larger and leaking blood and pus.

    Katie ended up in the emergency room and in the hospital on IV and meds for five days.  The CT scan and MRI showed that Katie had a tumor in her upper lip and gums but the ER doctors were uncertain as to what kind or tumor it was.  Katie had to be referred to a specialist for a biopsy.

    For the next two months they went from specialist to specialist trying to get someone to take her on as a patient and do biopsy.  No one wanted to take her on, they had never seen a tumor like Katie’s.  One doctor told them, it is once in a lifetime, they see a tumor like Katie’s.

    They finally found a doctor at Stanford University that was willing to do a biopsy on her.

    After 15 months of running around to specialists they finally got the diagnosis, Katie has a Lymphangioma, aka Lymphatic malformation. www.staycalm.org

    As a result of the tumor, she also has a necrotizing bacterial infection in her gums. She also has to go to a pediatric dentist 2-3x a week to get her gums debrided and cleaned.

    She has to be on antibiotics for the infection and steroids to keep her lips from getting too big.

    Doctor said that there is no cure for what Katie has, that she will have a life time battle with this disease. He explained that a cold or flu can trigger an infection or episode that will cause her lip and gum to swell.
    They were also told that this disease is opportunistic and can spread to her cheeks and face.

    They are hesitant to cut it they do not want to damage her lip or damage gum tissue and teeth. After researching Katies condition on the internet, her parents found an expert that specializes in these malformations, but he is in New York. Dr. Milt Waner  www.vbiny.org

    They are taking Katie and consulting with Dr. Waner in October. If he takes Katie on as a patient on, they will be headed to New York with Katie for surgery and follow up treatments.

    From Katie’s Parents:

    We thank God for Katie. We are blessed to have her in our family. When we start feeling like life’s not fair, when we feel like we can’t get through another day, we think of how fortunate we are that she’s here at all.

    She is a miracle and a blessing to us. Every moment is precious, priceless and to be cherished.

    We hope that Katie’s story will encourage and inspire others facing similar or even worse challenges than we have. Thank you for all of your kindness and prayers!