We all have DNA. We all have a specific genetic make-up. Of course, now more than ever I am interested in learning all I can about it. Because everything that goes on inside of our bodies is so complex and it is all because of our DNA.
It all sounds very scientific, I know. But let me remind you that I know the God who created us all perfectly. He wove us together with such great precision that it is incredible. And He knows every detail. But here, on earth, in this moment--it would be really awesome if I knew alot of the details that I may not ever know about Mabel.
So as you know, our Dr's are researching 'syndromes' that Mabel may need to be tested for. What is a syndrome? By definition it is a group of signs, symptoms or features that occur together and create a picture which may suggest the presence of a particular medical condition or disorder.
Did you know that 30-40% of patients who have the signs and symptoms of a syndrome are undiagnosed? In the past, I maybe would have read that and thought very little about it much like you may have. However, my hope is that even though we are at the very beginning stages of figuring out this Mabel mystery, I can bring awareness to that staggering statistic. Because there are far too many families experiencing the emptiness and frustration that I have just stumbled into...
There are over 250 million people living with rare disease worldwide; the largest affected being children.
There are over 7,000 rare diseases that have been identified. Imagine then, how many more are not?
So there is a new campaign that is growing and trying to bring awareness to rare disease. It's called the 'Global Genes Project.' Obviously we don't know what is going on with Mabel. We don't know if what Mabel's symptoms are pointing to will lead us to a rare disease. Our hope is that they will not, but they very likely could. At this point it doesn't matter, though..my heart is heavy for the families that are living with conditions that are so heartbreaking. Their struggles are often private and lonely. And I don't want us--any of us--to forget how important it is to support them in whatever ways we can.
It's simply about doing the right thing. Once you've been educated, you have no excuse to turn your back and look the other way. I feel like we must act....
Spread the word. Educate yourself.
And specifically, for this cause, wear jeans.
That's right. You read it right.
The campaign promotes alot of neat things. Because there are 23 pairs of genes in each one of us, they are encouraging everyone who wants to be involved to 'wear jeans for genes.'
One pair of Jeans for 23 pairs of genes.
We all need to be involved. We all have genes. Every single one of us. We also all have genetic mutations. It's true! For more information on any of this and to watch some awesome videos that will probably explain it all a whole lot better, please visit www.globalgenesproject.org and you can find them on facebook as well.
Because we are all human and we all have genes and DNA, I think it's important to support the families who are in the midst of rare disease by helping them feel less alone.
Tomorrow is 'National DNA Day.'
If you are reading and you love Mabel and our family, thank you!
But let's ALL join together not just for Mabel but for other families who are living with rare disease, syndromes, or an undiagnosed blessing!
Tomorrow... April 15, 2011...WEAR JEANS FOR GENES.
Take a photo of yourself in your jeans and email it to me at firstname.lastname@example.org or send me a message on facebook with your photo attached. I will put our photos together in a collage and use it to bring awareness to rare disease and syndromes without a name!
I appreciate your love and support for Mabel.
There are families experiencing life in such courageous ways who humble me and bring me such hope. I don't believe God wants me to sit back and be silent during this beautiful journey with Mabel. I believe that I can learn and teach others alot in the midst of this and I am thankful for the chance to do so.
For more information you can visit: