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JUNE 2010 NEWSLETTER

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Hero #2 Updates

    Hero Family #2


    Sophia Lodovico was born January 16, 2006. She was 7 weeks premature and weighed only 2lbs at birth. Her first 10 months of life were relatively normal until a lesion was discovered on her tongue during a routine visit with her pediatrician. Several months later, an esophageal web was discovered. In September of 2007 at the age of 20 months, Sophia was hospitalized with what we thought was pneumonia. Little did we know what lied ahead for her.

    Sophia did have pneumonia, specifically, Pneumocystis Carinii Pneumonia (PCP), a form of pneumonia often associated with people with weakened immune systems. After 42 days at Children’s Hospital of Pittsburgh (CHP), including 16 days spent on a ventilator in the Pediatric Intensive Care Unit (PICU), Sophia was diagnosed with an extremely rare genetic condition known as Dyskeratosis Congenita (DC). Since this diagnosis, we have learned that Sophia suffers from the most severe form of DC known as Hoyeraal-Hreidarsson Syndrome.

    Over the past 16 months Sophia has struggled with many of the symptoms associated with DC and more specifically Hoyeraal-Hreidarsson. Some of the symptoms that have affected Sophia include leukoplakia on the tongue, reduction in red and white blood cells and platelets, immune abnormalities to include reduced immunoglobulin level, prenatal and postnatal growth retardation, an esophageal web, excessive sweating of the palms and soles, sparse hair, gastrointestinal abnormalities including colitis and ulcers, an underdeveloped cerebellum causing poor coordination and balance, developmental delay, failure to thrive, short stature, and ultimately progressive bone marrow failure (BMF) also known as Aplastic Anemia. Treating these symptoms has been extremely difficult as they have often resulted in lengthy stays at CHP. Overall, Sophia has spent over 200 days in the hospital including 37 days spent in the Neonatal Intensive Care Unit of Allegheny General Hospital and extended stays of 42 and 39 days at Children’s Hospital of Pittsburgh. On February 20, 2009, Sophia was again admitted to CHP and her current stay has been 45 days long and counting.

    Sophia is currently suffering from Aplastic Anemia, and is currently at CHP awaiting a Stem Cell transplant. However, while awaiting her transplant, Sophia contracted a Staph Infection due to her weakened immune system and has also been suffering from Congestive Heart Failure. On March 23, 2009, Sophia was moved to the Pediatric Intensive Care Unit (PICU) at CHP where she was intubated and placed on a ventilator so that she can recover. Sophia’s transplant has been postponed temporarily until she gets healthy again.

    Sophia is our little Angel. We hope and pray that Sophia is given a second chance at life so that she can touch the lives of others as she has touched ours. We ask for your prayers and continued support.

    A Letter from Sophia's father

    Saturday, May 30th, 2009



    Dear Friends and Family,

    As I sit here and write this, I do so with the heaviest heart. I can’t control the stream of tears rolling down my cheeks. Around 7 PM last evening I held Sophia in my arms and rocked her on a rocking chair one last time. As I sat their rocking her I looked into her eyes and watched her take her last breath. She was relaxed, didn’t struggle and was at peace. She had a look of relief on her face after a long day in which she struggled to breath. She has been on the bi-pap machine for the past few days and it was set at the highest vent settings and at 100% oxygen. It became evident that her time was coming close to the end when Sophia began to significantly struggle breath around 6 PM and we did not want her to suffer any longer. It was our wish not to have her intubated and placed on the ventilator again because she would never come back off of it. Once her oxygen stat dropped below 80% last evening, her breathing rate was around 100 breaths per minute and her heart rate was around 215 beat per minute, we could not take watching her suffer any longer. I asked for a rocking chair so that I could sit and rock Sophia one last time. She was placed in my arms and I was so scared to watch her die. When she was in my arms, she seemed so relaxed as if she knew everything would be alright. We requested that all of her medication be stopped except for the morphine and versed and all the tubes and wires were taken off. Around 6:50 PM with family gathered in the room to say goodbye, we asked to have her bi-pap mask removed so that everyone could see her beautiful face one last time. Beginning with Dom and Cassie, everyone lined up and gave Sophia one last kiss goodbye and in less than 10 minutes the near 2 year journey with Sophia’s battle with Dykeratosis Congenita had come to an end. Sophia took her final breath around 7:07 PM. Our little Angel had gained her wings. After she passed, Sophia was placed in Nicole’s arms and she held her for a couple of hours until everyone had gone home. We are so proud of her. She struggled and fought to the very end. Not one time did this child ever complain about a thing. She took everything in stride and made the best out of her situation in life. She always had a positive attitude, even up to her final hour. Her smile was infectious. She brightened every room she was in. So many of the doctors and nurses that cared for Sophia at CHP came in after she had passed to say goodbye. She had touched a lot of people there. She was one really brave little girl.

    I struggle everyday with why this all happened. I believe she was sent here to make me a better person, a better dad. Last night, her job was finally complete. She accomplished her task. She was finally free to go and be with the Lord.

    Please feel free to pass this along to anyone who may have been touched by our little girl.

    David
     

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