The beginning.

Posted October 06, 2009

Hello!
I wanted to give everyone an upate on Jayden.

We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden’s liver was enlarged. He bagan to be concerned about if all these “unrelated” things would add up to a genetic disorder and, after today we think he is right.

We saw a genetic dr. at Children’s memorial and he thinks Jayden (and possibly Brooklyn if it is the more severe type) has mucopolysaccharidosis. He is having testing done and the types he thinks Jayden has is Hurler syndrome which effects boys and girls OR Hunter syndrome which effects just boys. Regardless, it is a genetic disorder on the X chromosome. It is a progressive disease that currently has no cure. We have just done the testing (blood and urine) so that is all we know.

Right now, Jut and I are a bit of a mess. The life expectancy is 10-50 years old, and although there is treatment it sounds like a slow, painful, early death which we are not even trying to think about! We are really trying to not get worked up until the test results are back. Please just pray for our family, and our little boy. God is a big God and loves Him even more than I can imagine! That is a hard reality now. Jayden just saw me crying and with his bright smile wiped my tears. This is all so fresh so sorry for the bit of emotional breakdown!

One thought on “The beginning.

  1. I just want you to know I am praying for you. When we found out that Nevaeh wasn't going to make I remember praying so hard for a miracle…and when it wasnt the miracle I wanted I was so angry…BUT I realized God was in control even in that. Sometimes his miracles our different than what we expect but they are still perfect. Even after my accident – the pain and suffering will be over soon!
    Know that He will deliver you! and Jayden AND Brooklyn! I will pray with faith more than a mustard seed for you!

    april feusi

    Like

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