Maci was a happy, funny 14 month old when we received the devastating news that she had MPS-I. Within 3 months of diagnosis she had her bone marrow transplant. She overall did well with the BMT, but had moderate GVHD of the skin. The physicians suggested photopharesis therapy to help alleviate the GVHD. This treatment actually worked quickly, and we were able to wean her off the steroids. On July 27, 2017 Maci went into the hospital with a fever, and soon after her getting emergently intubated in ICU we learned that she had a line infection and was in septic shock. We were told that she was not going to make it through the night… they were wrong. She fought so hard. She spent over 30 days intubated on the ventilator, and once extubated we were admitted for another 2 months. We finally went home, and a month after being home she began requiring platelet and blood transfusions. We were told that this a rare complication of the BMT, but not to worry because it will resolve itself. She fought so hard and had over 100 blood transfusions in a 4 month period. We were admitted at the end of April and blood became scarce for Maci. She was given almost 100mg of steroids to hold her over until more blood could arrive… during this time she declined quickly. Her blood pressure sky-rocketed for hours, and eventually she couldn’t hang on anymore. Maci passed away on April 29th, 2018 in our arms. This little girl was our everything and even though she was only with us for 2.5 years, she showed us what true love and happiness was. She absolutely loved Sesame Street and she had the funniest personality. Even though we will never begin to understand why this has happened, we know that by telling her story can make a difference and promote awareness for MPS.
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