Unfortunately, Alex suffers from Mucopolysaccharidosis type 2 (MPS II) which is also referred to as Hunter Syndrome. Never heard of MPS II? Well, until a year ago neither had we. It is a VERY rare genetic illness that typically only affects males. Essentially Alexanders body is unable to produce an essential enzyme which is needed to break down mucopolysaccharides. As they build up they interfere with the way the cells and organs of the body function. This results in severe damage. It is chronic and progressive.... it is life limiting. Saying this next statement is incredibly difficult.
We will most likely loose our beloved little Alex while he is still young. The typical life expectancy for those with Hunter Syndrome is between 10 and 20 years. He is already 4 and a half......I can't stomach the thought of how quickly his life is going by...of how little he has left.
Alexander's little body has already suffered from the impact of Hunters Syndrome. He has hearing loss, developmental delays, and a small leak in each on of his heart valves. As Alex grows older he will suffer from even more symptoms of MPS II.
Here is a short video that explains Hunter Syndrome better than I can.
There is currently no cure for MPS II. Alexander and his mom, Crystal, spend one entire day every single week in a hospital room. There, Alex recieves enzyme replacement therapy through an i.v. which helps his body to break down the mucopolysaccharides and slow his deterioration. Imagine being only 4 years old and having to sit inside a sterile hospital room all day when all you want to do is play. Doing that week after week for the rest of your life.
Alexander's parents and doctors have decided that a stem cell transplant is the best option. If successful, it would allow Alex to produce the missing enzyme on his own. He would no longer need to get weekly enzyme replacement therapy. Not only would that save him from having to be in the hospital one day, all day, each and every week. But it would allow his body a steady level of enyme to break down the mucopolysaccharides 24/7 which the synthetic enyme can't do (each day after enzyme replacement therapy there is less and less enyme in the body). This could mean a higher quality of life for Alex, as well as a longer life!!
Alex and his family live in Oregon and need to travel to Minnesota where the stem cell transplant will take place. Alexander will have to undergo a short round of chemo prior to the transplant which will make him very sick temporarily. The process will take approximately 4 and a half months. He will be isolated in a stem cell transplant wing of the hospital. Because Alex will often be very ill, he needs both of his parents with him so he can have someone there around the clock. Emotionally this procedure will be very difficult, but financially will be hard as well. Alexander and his family need to raise the funds to cover airline tickets as the doctor doesn't want them driving home to oregon after Alex has his transplant due to the possibility of complications. They also need help to offset the 4.5 months of being in Minnesota with no income to cover their home in oregon and living expenses in Minnesota. Luckily they will be staying at the Ronald McDonald house near the hospital in Minnesota. However, we need to ensure they have a home to come back to after going through such a difficult medical and emotional journey.
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