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SUPERHERO SOPHIA

Sophia is the youngest person we have found in the usa with this condition. She was diagnosed with covid for the 2nd time on Jan 1. She only had a stuffy nose. Jan 10th we were in the er with bad stomach pain. They found her celiac artery was compressed on a cat scan. This condition is known as median arcuate ligament syndrome. It is a rare condition in older teens and adults. It is usually misdiagnosed for years. They think covid cause this condition to be a lot worse in Sophia. We had to find the correct treatment and testing.

 

She had surgery at nationwide childrens hospital in Columbus on 4/1/2022. She had robotic surgery. She had several unheard of complications including but not limited to a blood clot on her aorta. She spent 18 days in the hospital with complications. She had a long recovery but was feeling better.  She had a feeding tube put in place which helped her try to gain some weight. She did really well for a few months. She got hit again with covid end of July. She started getting sick again after. We are in the process of going through testing to find out if the compression is back or there are other compressions. With NO cases at all with her age group the drs are in best guessing scenario. You have a rare disease already and then you have zero patients at her age in the USA. There is not a data base to locate others.

 

We have looked and our drs have been looking. This is VERY under diagnosed and hoping we can spread awareness. There is some research this might be autoimmune which would explain so much.  Sophia currently is not able to do school. She sleeps about 14 hours or more a day. She is almost completely on tube feeds. She is 9 and 49 pounds. We have weekly appts and testing in Columbus at nationwide and are reaching out to other hospitals across the country and Germany. 

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