Katlyn's Struggle with ADA SCID

Thursday, April 9, 2015

Day +252

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Day +252 Finally things are starting to look up for us. Katlyn had her appointment at the IWK yesterday and by the time we left we felt on t...

Day +235

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Day +235 we are headed to the Iwk to start the new medication to hopefully get rid of the norovirus. I pray it works. We need a miracle. ...

Day +219

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Day +219 know it's been awhile since I've updated but that is because Katlyn has been feeling a little better each day. With each da...
Tuesday, February 17, 2015

Day +198

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Day +198 Happy Valentines everyone. We will be spending the day cuddling and being so grateful we have each other and this little bucket ful...

Day +192

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So happy to update that we are back home after spending the weekend in the hospital. Katlyn had a fever most of the weekend and a terrible h...
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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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