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Pull Back the Curtains

isabeltheincredibl3

This is what Hereditary

June 22nd 2018 Izzy at 16 Months Old

TTP looks like. Not eating for days, fevers flirting with 104, sicknesses that strike from one hour to the next. Spending more days in the hospital than at school with her friends, worrying about every nap, bruise and cough and putting her through the ‘works’ each time, pokes, IVs,catheters, X-ray and monitors. We tend to post the pleasant pictures, the silly ones making light of a transfusion day or an ER visit but reality is 5 out of 7 days are spent running though our medical checklists, wondering if it is safe for her to go somewhere or making phone calls back and forth with doctors. •This is life•This is us•This is our superhero• #raredisease #ttp #superbaby

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