Katlyn's Struggle with ADA SCID

Tuesday, February 17, 2015

Day +190

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Katlyn spiked a fever yesterday and she has been admitted to our local hospital while they run some cultures and start her on antibiotics. H...

9 years old

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Oh how amazing it is to spend this wonderful day with this beauty at home. What a sweet blessing. God is good. HAPPY BIRTHDAY Katlyn Demerch...

Day +186

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Day +186 Not a whole lot going on except for being extremely cute. Katlyn has been doing awesome. She has been playing out in the snow every...

Day +174

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Day +174 I'm so happy to announce that we are finally home! ! And it's awesome. The new medication Octreotide is working wonders an...

Day +166

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Day +166 Not a whole lot off change in things lately. We did start a new medication today called Octreotide. This medicate will reduce Katly...
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About Me

Katlyn
Follow 8-year-old Katlyn, diagnosed with adenosine deaminase (ADA)severe combined immunodeficiency (SCID). This is an extremely rare condition where there is a defect in her ADA gene. The ADA gene is responsible for filtering the body of toxic metabolites. In Katlyn's body, those toxic metabolites are not filtered and therefore, kill off her lympocytes, leaving her with virtually no immune system. Katlyn is has participated in a gene therapy protocol in Bethesda, MD at the National Institute of Health, but unfortunately it did not work. She is now preparing for a bone marrow transplant. Katlyn this is an account of when you were little and all you had to go through. We love you sweety!!!!
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