Update on Reagan

reagan.jpgWe have been praying as a church for David and Sophia Herndon. Their daughter Reagan has Rett’s Syndrome. They are going through a difficult trial. I told David earlier today in an email that I wouldn’t wish their trial on anyone, but at the same time they were learning lessons that could not be learned any other way. Paul said that he would glory in his infirmities. It is our prayer that the Lord will do a wonderful work in the lives of this dear family and use Reagan’s situation to bring glory to His name.
Below is an email update from David about their recent trip to John Hopkin’s.

Hello everyone.
Sophia, Reagan and I want to thank each of you for your prayers.  We also want to give a quick summary of our trip to Johns Hopkins and communicate to you how your prayers were answered.  One thing that was very apparent to us was the direction God has given for months now. 
This was actually the 3rd time this year that Reagan was scheduled for an MRI.  For various reasons, the first 2 MRIs could not taken place.  On the first day at Johns Hopkins the original research study that we were scheduled to take part in was changed to a new drug research study which did not require an MRI.  Sophia and I were very excited not to have to place Reagan under sedation and at the end of the first day, Sophia just looked at me and said, ‘you know David, God just doesn’t want Reagan to have an MRI.’  How awesome it is to see how God directed our paths even when things did not make sense to us.  Bottom line:  God answered your prayers we requested regarding the MRI.
The flying experience went better than we expected.  She was content listening to her Baby Einstein music, watching her movies and eating every peanut we placed in front of her……again, answered prayer.  The last minute research study schedule change did negatively impact our return trip Wednesday night and after various delays we finally arrived home at 2am.
The testing performed was exhausting for Reagan and us.  However, she was very brave and did well for the most part.  The swallowing test/tube in stomach went much smoother than we could have hoped as well.….again, answered prayer.
Being at Johns Hopkins was also a constant reminder of why we were there.  Living/breathing Rett’s Syndrome for 3 solid days was emotionally exhausting.  It was disappointing to see just how little is still known about this rare disease, even by those who have studied it for so many years.  However, God understands it fully and as He sees fit, will allow us to as well.  I was reminded often that God is at work, in every circumstance of our life, building our faith.
The drug study that she is now taking part of is in no way a cure.  It is only attempting to decrease a specific enzyme that seems to be high(almost to toxic levels) in girls with Rett’s Syndrome.  The current theory is that these levels are at their peak in these girls between the ages of 2-4 years old.  We pray that Reagan will benefit from this drug with little/no side affects.  We also pray that this will unlock even more doors for help to Reagan and other girls with this disease.  We will have to return to Baltimore now in 6 months instead of 2-4 years for a follow up.  We do not look forward to having to repeat many of the tests that she has just now gone through but we trust that you will hold her up in your prayers then as you did last week.
Jeremiah 29:11 ‘For I know the plans that I have for you,’ declares the LORD, ‘plans for welfare and not for calamity to give you a future and a hope.
thanks again!
David, Sophia & Reagan

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