The story of Noah
Noah’s had a tough battle trying to figure out what is wrong! It took over two years of ER and doctor trips to finally get infront of the right doctor’s to diagnose him. Through the journey he and I were told he needed therapy, wants attention, is trying to get out of school and all sorts of other things because doctor’s didn’t know why he was in pain and having trouble eating.Â
We found out he had Mast Cell Disease along with Gastroparesis, GERD, dysautomia and POTS. Mast Cell Disease is rare and effect Noah is so many ways. He has had many piccs but not has a central line to give him fluids, medications, and( nutrition via IV). For a 3 month period he was npo via mouth because he was reacting to most foods. The needs to wear masks to protect him self from scents which can give him an allergic reaction and from germs. Anytime he has a fever he is admitted to the hospital. When he does get sick, his conditions make it worse. He had to quit school last year and does some homeschooling when he isn’t admitted to the hospital. Last year he was admitted to the hospital over 10 times. His stays last from 2 to 16 days at a time. He needs to use a wheelchair for more than a few steps because he can flare from walking too much, he also can get very dizzy when standing and walking
Due to his rare condition local hospitals will not admit him, so of it isn’t breathing related we need to drive about an hour away to get treatment.Â
Despite everything this disease has taken away Noah still finds things to enjoy! Painting, YouTube and video games are his favorite things to do in and out of the hospital. He is hoping to be able to return to school sometime next year! Â