The Defender of Mankind

When we were picking a baby name for Alex (Alexander), Dan really wanted to name him Jace, but a Jack and Jace were just too close.  We kept reading the baby name books looking for the right name to hit us.  I can't even think of a better name for Alex than the "Defender of Mankind" the meaning of the name Alexander. It gets even better.  His middle name means "Healer".

Little did we know, he would do just those things for his youngest brother, Nicholas.  He has defended him from the strife of MPS II, Hunter Syndrome.  Alex was the first to be diagnosed and that has really saved Nicholas. Alex, through his own suffering, has taught us how to save Nicholas. Alex is one of the strongest children I have ever seen.  He's mentally strong and just as strong physically if not more so.  He really is built like the "Defender of Mankind".

All of us having been working really hard to save him from this terrible disease.  Not a day goes by that we don't try to figure out how to help Alex.  There's a gap were trying to fill and it's from now until this date.

September 2017

This is the estimated completion date of the Clinical Trial that Nicholas is involved in, getting medicine into the Central Nervous System of children with Hunter Syndrome.  September.  That seems so far away.  It's with great disappointment that I read the year 2017.  I was so hopeful that this trial could get approved in 2016, and there would be less of a gap to fill until Alex could get the medicine that is helping save and stabilize his brother.  Since I can't personally move or influence the date, we are just going to focus on what we can do as a family, as teachers, as therapists, and Doctors to help keep Alex doing as well as possible. 

We're filling the time with therapy, seeing specialists locally, repairing existing damage to his body by scheduling surgeries this summer, and filling him with love, and hope, and telling him he is still here, he is still in his body and we can still defeat this.  Alex can still have a good life, and he can still get better if his brain and central nervous system get some help through medicine.  

While we wait out this time, we took Alex to hyperbaric oxygen therapy.  This showed some promising results that we are so very, very thankful for and for people who support us and keep telling us about things that can help us such as the oxygen therapy, such as nutrition, such as things that help cancer patients, those with Autism and others.  

We are also filling this time with love, and fun, and happiness because that is what any "Defender of Mankind" deserves.  

The Cherrstroms