Everhett was born at 7:00 AM on the 17th of March, 2021. He was a healthy baby, weighing 6 pounds 6 ounces and 18.5 inches long. We were all able to go home the next day and we had every indication that he was a 100% healthy child all the way around. He reached all of the usual milestones leading up to age 1. Sitting up, crawling, eventually walking and aside from getting ear infections frequently, we still weren’t concerned for his health at all. Now around 18 months we started noticing some things that didn’t seem right. He became bloated and pretty much stayed bloated consistently, his hearing started fading away and he seemed to have come to a complete halt as far as development skills. He almost started expressing a lot of anger/frustration. Fast forward several months later we were finally able to get tubes put in his ears. This restored his hearing which gave us hope that he would pick back up his speech development. Time went by and no improvement. We voiced our concerns about his development with the head start program he was in and he was referred to a speech therapist along with occupational therapist. After almost a year he had not only showed no improvement, but fallen behind in almost every area. We started to realize that something was wrong and we weren’t getting the right answers. We changed his pediatrician and expressed all of our different efforts all leading to dead ends and we were curious if he might have something holding him back mentally. We were pointed in the direction of a geneticist who met with us and Everhett. After a long time spent with us and Everhett, she decided to run a specific genetic test based on her evaluation of him and all of the history we had given her. She explained that the test was for Mucopolysaccharidosis and that this was meant to rule out any types if determined negative. We started doing research while waited the long 6 weeks for results to come back, we were stretched between the multiple types of MPS and just prayed it would be a negative test. July 26th of 2024, we headed to Corpus Christi to meet the geneticist, not knowing that our lives would never be the same. This day, Everhett was diagnosed with MPS ll. To this day it breaks our hearts to watch him so unaware to the disease that’s destroying him. But his smile and big heart are what keep us going. We have been working nonstop since this day to educate ourselves and make sure that we’re doing everything we possibly can to give him the best chance.
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