All About Alex

Alex was diagnosed with Hunter's Syndrome in August 2013....After many doctors, specialists,and tests...his future was determined for Alex and his family. Hunter's Syndrome is in a category of lysomal staorage diseases with no cure! Hunters syndrome effects the brain, lungs, heart, bone structure, and joints. Alex has been receiving enzyme replacement treatments once a week since November 2013. He was receiving these treatments intraveniously until he had a mediport placed in February to make access easier. Although the infusions are just to slow the progression of the disease, it is sometimes frustrating to see things becoming worse. Alex has severe joint contactures...the worst being in his hips and shoulders. He will soon be receiving a wheelchair to help relieve the fatigue and pressure of his joints. Alex has also had many bouts of bronchitis, pneaumonia , and asthma. Alex also has a mild valve leakage which is monitored yearly. He receives speech therapy, occupational therapy, and also physical therapy to help him get to a better foundation for everyday function. His mental function is at the ability of a 2 to 3 year old. Testing is still being done to see how severe Alex's case is. Depending on severity,. Alex could live to be 15 or in less severe cases well into his 50s. Being Alex has had many of the symptoms since a very young age....it seems he is most likely a more severe. Due to limited cases of MPS....research is limited. Although everything points to the more severe...we keep our fingers crossed everyday that he lives a long happy life! Our goal is to give Alex the best life we can regardless of limitations the disease puts on him.