Monday, November 16, 2015

PRAYERS! Clinical Trial possibility for Ryan!

Needing prayers. We found out last week that there is clinical trial at UCLA that Ryan qualifies for.  Its called exon skipping. We have been waiting for 14 years for a possible treatment for Ryan's specific deletion. I will write much more details later.  Right now i am asking prayer for the following specific things.

1. Jeff will be able to get our van and trailer ready, we have to be there in 2 weeks. ( Van and trailer story to come!)
2. Ryan will qualify. He will be having initial testing Dec.1st. Right now his pulmonary functions are borderline for what they have to be. He is at 48% he needs to be at 50% before they will proceed with the rest of the qualifying test. Praying for 50% or better! And for the rest of the test to come back good. EKG, Echo, blood work etc.
3. All the details of a safe place for Ryan and I to stay while there. We are going down for testing. If he qualifies and we proceed we have to be prepared to stay there for up to a year! Overwhelming to say the least!
4. Safety for travel. Jeff will be driving Ryan and I down to California, get us set up and then he will fly back home.

I can think of a hundred other things to pray for, my mind is swirling, but these are the things that need to happen for us to proceed. So we take it one step at a time!  Thank you all!

Here is a very basic short you-tube video that describes the exon skipping

Here is an article that explains a little more. Ryan will need exon skipping 45.