Our Story
In November of 2017 Gavin was diagnosed with a rareand life limiting genetic disorder called GM3 Synthase Deficiency. Not only is his disorder extremely rare, he is also the first person ever identified with his specific genetic mutation. He is truly one of a kind. Shortly after Gavin was diagnosed, we were put in contact with a specialist in Pennsylvania, who is one of a few doctors that has actually...
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High fever
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Last night, Gavin spiked another temp of 103 and this morning an even higher one, 105.2. He was started on IV antibiotics last night and his WBC has... Continue Reading »
Fever and high WBC
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With some more medication decreases on Friday, it seemed Gavin was starting to finally feel better. Sunday he was in a great mood (mostly) but that was short... Continue Reading »
Irritable
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This picture isn’t easy to post but it is reality. The past week being home from the hospital has been rough. Non stop fussing. All day long. This... Continue Reading »
It worked!!
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“Faith is taking the first step, even when you don’t see the whole staircase.” A little over a year ago, after our hearts were shattered to pieces by... Continue Reading »
roid rage
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Gavin has been having another rough day. “Roid rage” is in full effect. The steroids have been making him pretty miserable and he appears to be having a... Continue Reading »
Numbers back up
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Gavin’s labs this morning showed his liver numbers went up slightly, so his transplant doctor decided he needed more IV steroid doses to try to bring the numbers... Continue Reading »
Steroid started
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Gavin was started on the IV steroids and Prograf last night. His labs this morning showed that his livers numbers went down again. Today, the doctors decided to... Continue Reading »
Biopsy Results
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We waited all day and finally the liver biopsy results came back a little while ago. The biopsy showed Gavin’s liver is still in rejection, however it is... Continue Reading »
Biopsy
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Gavin just got back to his room from his liver biopsy about an hour ago. Everything went well and they will hopefully have the results sometime later tomorrow. ... Continue Reading »