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by Dr. D ~ September 28th, 2007

Message from Aran

I need to be honest with you.  We’ve lost our ground.  The day before yesterday Isaac had that shaking that the doctors are calling seizure.  They gave him a ‘loading’

dose of phenobarbatol, then a low-maintenance dose.  Then yesterday he had it again a couple of times so they gave him another loading dose and up’ed his maintanence dose to a higher one on a daily basis.  The neurologist came by and gave us an article about CblC (the disease they say he

has) and epilepsy…  It is an article from a study some Italian doctors made on 10 Italian pacients who had this disease.  I read some of the article.  I have to be strong for my family, Camila needs me to be strong.  I couldn’t hold myself up too well after reading the article, so I just went to take a shower so I could cry some without anyone seeing… it hasn’t been easy.

What shocked me the most was that out of the 10 patients, all 10 had mental retardation, about 1/2 mild and 1/2 severe MR.  Many had facial anomalies, like long face, high forehead, large, floppy, and low-set ears and a flat philtrum.  Most had seizures.  One died at 3 yrs old. Most had nystagmus, where the eye makes quick uncontrolled movements.  The other findings in the follow up I didn’t even look up.  That was enough to scare me. It turns out this so called disease is far worse than we thought and all the symptoms for the disease our little Isaac has.  We are heart broken. 

The only thing that keeps me going is knowing that the God whom we serve is much bigger than any of our problems.  He knows what He is doing.  I just finally surrended to the point of praying and saying, “God, I want a healthy baby, but above all, do Your will, not mine.  You know what is best, I don’t.  I trust You to do the best.”

This song is what is currently in my heart:

Who is this, who calms down the sea, and the thunder heeds to His voice?  Who is this, who walks upon waters, and wherever He goes, all things He can transform?  Who is this who can see all things, even the heart of man.  Who is this who heals the sick and can restore the body and soul?

His name is Jesus, the son of God, who died on the cross in my place, but the death He overcame and from the dead he rose, there is none like my God!

My God is a God of miracles.  There is no limit to His power.  He does the impossible, to Him there is nothing difficult…  Who is this, who closes the mouth of the lions (Daniel and the den of lions), and in the burning furnace he can go for a walk?  Who is this, who raises the dead to life and makes man experience a new life?

Who is this who opens the doors to the jails, and in freedom leads His servants to walk?  Who is this who says “I am coming soon to get my beloved bride”?

No more words. :)  

Aran, Camila and healthy, healed, perfect baby Isaac             *Top

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