The road ahead
What is Hunter's Syndrome? Basically, Hudson does not have an enzyme that he needs to be able to break down proteins.... therefore, it accumulates in different organs and joints, etc. in his body. The accumulation of this is what will cause many severe symptoms as he gets older. Usually kids don't get diagnosed until the accumulation has built up to a point where the severe symptoms are more recognizable. Hudson is so, very blessed to be diagnosed this young.
The good news is that this is the only disorder of its kind that actually has some medication that will help! Elaprase is a replacement for his missing enzyme. He will need to have it once a week at Riley until, eventually, we can do it at home with home healthcare, and then eventually we will learn to do it. Elaprase is only 6 years old, and there are very few infants that have been able to get it... in fact, I found out that Hudson is the youngest person in Indiana who has been able to get it! Hopefully what they learn about how Hudson progresses will help them learn about the limits of the drug.
To learn more about Hunter's Syndrome (MPS II), please head to
http://www.hunterpatients.com/
The good news is that this is the only disorder of its kind that actually has some medication that will help! Elaprase is a replacement for his missing enzyme. He will need to have it once a week at Riley until, eventually, we can do it at home with home healthcare, and then eventually we will learn to do it. Elaprase is only 6 years old, and there are very few infants that have been able to get it... in fact, I found out that Hudson is the youngest person in Indiana who has been able to get it! Hopefully what they learn about how Hudson progresses will help them learn about the limits of the drug.
To learn more about Hunter's Syndrome (MPS II), please head to
http://www.hunterpatients.com/