Thursday, December 18, 2008
Hello Family and Friends...
It is with a heavy heart that I write this tonight.
Our baby Marcus has been diagnosed with "Retinal Dystrophy", more specifically "Retinitis Pigmentosa". The ERG test showed that Marcus's retina is not functioning as it ought to. The doctor said that his retina is pretty much not working, if he had to put a percentage it would be some where between 10% to 15% functioning. This means that Marcus basically has no peripheral vision. He has a very limited scope of vision, kind of like tunnel vision and he's slightly near sighted. Glasses will help him some time in the future but as of now it would be too hard to have glasses since Marcus isn't mobile and so forth.
So what this means going forward is that Marcus will eventually lose his vision. To what extent, we don't know and can't predict. We also don't know how fast this degredation is going to occur. This disease can progress really fast where Marcus could be affected immediately, or in some cases progress slower where he would have sustained vision, or what he has now for years before anything starts to happen. In some cases people have had their vision sustained into their adult life.
Losing vision can range from partial blindness to complete blindness or loss of color, clarity etc...So the worst case scenario is complete blindness.
This disease also has no known, proven cure right now. So now our little champ has two uncurable syndromes/diseases.
So as you can imagine it's crazy hard to take all of this in. If Marcus didn't have Joubert but had Retinal Dystrophy that may have been a little bit easier. But because JS causes developmental delay in so many areas and then on top of that have vision issues that could hinder his development makes it that much harder for us.
The one good thing is that Marcus doesn't have any pain whatsoever. You guys have seen him, he's a very happy child and we're thankful for that.
So right now Sue and I are pretty exhausted both emotionally and physically. But I can honestly say that we are doing well and it's all because of God's faithfulness in directing our hearts to His awesome Gospel through His servants.
We have been so refreshed, encouraged and blessed to be the recipients of so much ministry and service from all of you.
Sue and I want to especially thank Pastor James and his family for taking us in on Monday after our appointment. Thank You so much for serving and loving us. We love and praise God for your family. We're really glad that you guys are back!!!
There's a lot more I want to write, but at this point I don't think I have the capacity to articulate all of my thoughts. It's still too raw and fresh.
We covet all of your prayers...
Monday, December 1, 2008
I know many of you have been praying for our ERG. It was supposed to be today, but through some mix-up at the hospital (and by God's sovereigny) it has been rescheduled for Monday, December 15th at LA Children's Hospital.
1. That God will graciously sustain Marcus' vision for the rest of his life.
2. That Marcus will do well with the fasting, long car ride, gas mask, and IV (not his favorite stuff).
3. That we will not be anxious, but trust in the Lord joyfully.
4. That we will sincerely respond to whatever the outcome is with worship.