Manuel Gore was born in June 2009. His birthmother did her best to care for such a special needs baby but eventually realized he needed more care than she could give. She placed him for adoption in March 2010. A few days later we heard about him. By March 26 (his 9 month birthday) he came to live with us.
6 weeks later, he ended up with pneumonia and landed in the hospital. During that visit, they diagnosed him with a terminal brain disorder (Leukodystrophy). Leuko means white. Dystrophy means doesn't quite work right. So the white matter of the brain isn't acting right. The white brain matter controls all the autonomic things such as temperature regulation, heart rate, stomach control, swallowing, breathing, etc. All very important things. They called it "end stage" as all 3 sections of white matter were completely atrophied. (Turns out this was a misdiagnosis.)
They sent us home with hospice and basically told us to get funeral plans together, that he wouldn't be with us long.
But God is good. He is letting us keep Manny just a bit longer. In fact, he didn't decline as they predicted. In fact, he started getting better. MUCH better. He started shocking the doctors.
At first, he could move only his eyes. NOTHING else. Slowly, his neck, hands, arms, feet, legs, etc started getting feeling and then movement. He started holding his head. He started sitting up. And just as exciting, he started getting stronger where he didn't need oxygen (even at night).
While his arms and legs are not very usable (yet), he is cognitively on level. He is bright, alert, playful, happy. It always shocks the doctors at how "present" he is. (Based on brain scans, he shouldn't be.) He talks ... a lot. Even says paragraphs and can read all his alphabet.
In December 2010, we were asked to do a TV show about his story. Here is the link to that post explaining all about that and the link on how to watch the 9 minute special they did on him.
We have no clue of God's whole will, plan and purpose in His life. We are hoping that He will continue to heal Manny. That he will be able to continue to spread joy wherever he goes.
Until then, we're just busy with life ... making every day count!
