Wednesday, August 03, 2005

UNDERSTANDING "CHARGE" SYNDROME

I have had many people ask..."exactly what is CHARGE and is this really bad?" I know it is scary, especially when you read information on the internet and you aren't sure what is/isn't factual and how this relates to Maxwell. CHARGE is indeed a rare and serious genetic disorder. However, the good news is that there is a very WIDE spectrum within the syndrome...and that gives us great hope!

It can affect the eyes, ears, nose, heart, brain, kidneys among other issues. However, every "CHARGE" case is completely different. For example, there is another "CHARGE" kid in the ICU right now (strange considering how rare the disorder is) and he and Max are very different from each other. And I met a wonderful mom of an adorable three year old girl with CHARGE who had a very complicated open heart surgery last week. She is doing great!

So far we have been fortunate to have good news in several key areas, including Max's eyes, ears, kidneys, and brain. They are not definite (since he still is so little and young) but initial tests prove the structures appear normal, which is incredible! Vision and hearing loss typically affects 80 - 90% of people with CHARGE, so we are keeping our fingers crossed that the initial tests prove accurate in weeks and months to come! Having at least partial (and hopefully complete) hearing and vision would be amazing and so pivotal in securing strong development for Maxwell.

We certainly have many health struggles ahead, but I am incredibly blessed that Maxwell is proving to be such a fighter and he is beating the odds and amazing me more and more each day!!!

If you have any specific questions about CHARGE or Max's particular issues, please feel free to ask...I will not be bothered or offended. I want you to feel knowledgeable and understanding of what Max is going through.

1 comment:

Anara said...

I'm so glad to hear that there is such a wide spectrum to Charge. Max seams to have little of the effects from it so far. YEA!!!!!!