July is Fatty Oxidation Month Hi Like I first mentioned Korrah was diagnosed with a rare condition Called MCADD or Medium Chain acyl-co-enzyme A dehydrogenase deficiency. .Which is not only a Fatty Oxidation disorder but a mitochondrial disorder. I am very lucky that Korrah was born appearing normal as to not face ridicule. But it does not lessen the severity of her disorder. She can be fine one moment and in a Crisis the very next. More children die of a Mito disorder than cancer every year and yet there are no cures, Almost no research, and most importantly Very few doctors. This month is to raise awareness about these disorders. Please Share the more people know the more people can do.
I made these Ribbons The Zebra stripe is for RARE disorders. a blue ribbon with Yellow Is FOD and a a Green ribbon for MITO
Another mom made a MCADD ribbon Of blue and pink Zebra stripes for RARE and the blue and pink for SIDS a purple strip for the kids who lived and a silver stripe for disabilty.
Eventually we would like to have some TEAM KORRAH shirts made a heart with butterflys on the back and a ribbon on the front
Background story of this photo. Was my first time something was wrong with Korrah. We had just gotten the results in possibly the day before. I had taken her to a Hospital near us in Clear Lake. I had already called Genetics and they had called the hospital to prep for us. While we were there the ER Doctor refused to treat us because She was Fine and he had more important People to treat. I breast Fed her the entire time only giving myself 5 minutes rest. After a few hours When they were still refusing to treat us Genitics called and told them to send us to them. It takes about an hour depending on traffic to get to them and I will always hold it in my heart how fast things can go wrong. She spent a couple of nights in NICU After that all because she Looked normal enough that a doctor refused to look at a protocol letter and did not treat her.
No comments:
Post a Comment