Support Hunter Syndrome Awareness T-Shirt

On June 29, 2016, we took Aiden to see a Neurologist at the Children's Hospital of Philadelphia for concerns with gross motor delays, speech regression and a host of medical conditions. Within 10 minutes of reviewing Aiden's medical history and meeting him, our older son Ethan and my wife and I, the doctor said she felt his kyphosis was the cause of a rare disease process called MPS, not congenital as was previously told to us. She also said Aiden did not look like us or his brother. We didn't understand. Aiden has Marielle's dark features and eyes. She said Aiden had an enlarged head, a flat bridge nose with flared nostrils, a large tongue, an enlarged liver and spleen that was causing his belly to protrude and become distended, thick skin, short stature and stiff joints. She ordered many tests including blood work, urine tests, an MRI, an ekg, an eeg and an x-ray of his c-spine. We left that appointment in utter disbelief. We were worried sick. This couldn't be real, could it? On August 16, 2016 my wife Marielle and I received the most heart wrenching news any parent can ever hear, "Your son Aiden has Hunter Syndrome, also known as mucopolysaccharidosis type 2 or MPS 2, a terminal disease." For several weeks we had known about this probable diagnosis, but since we were waiting for various test results to come in, we held out some hope that the suspicions were wrong. They were not. We thought having had some time to cry, yell, question why him or why us and process the suspected diagnosis would make it easier to hear the confirmation. Let me tell you something, NOTHING softens the blow of hearing your child has an illness you can not fix! With the exception of sharing our kids photos and videos on Facebook from time to time, we are pretty private people. We had never discussed family obstacles on social media before. But we realised something, not sharing this news publicly is doing Aiden and other children fighting this uphill battle a great disservice. Up until June 29th, we were blissfully unaware like most of you of this heinous disease. With awareness, comes funding for research and hopefully a cure.