Rare Disease Day

This post is one day late and not because I forgot but rather my computer did not work yesterday so here it is today!

Rare Diseases - What can I say. My little boy's body and mind is ravaged because of one and it is so unfair.

This Leukodystrophy has caused more chaos in his body than one can imagine. Because of this rare disease Robby cannot walk, can only say a few words and can barely see.

He is considered CP even though he does not have CP.

This is considered genetic although we don't know how because there is not enough research or funding for the scientists to start their genetic studies.

I included the United Mitochondrial Disease Foundation logo above too! For a long time they thought Robby had Mito. Thankfully after many tests it was ruled out for both him and I. But we have made so many Mito friends along the way I had to include their logo too!

It is so important that we advocate for these children!

From globalgenesproject.org

There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for our country’s children.

Please help raise awaareness each year on the last day of February, but also every day during the year! Urge your state representatives, legislators, congressmen to take Rare Diseases to Washington. Make everyone you know aware. Help save a child (and even adults)!


I entered a photo contest at http://www.rarediseaseday.org/
see this link if you want to enter your child!
http://www.rarediseaseday.org/yourstory/photo
All photos must be submitted by March 31st 2010. You can enter up to 5 photos.



Next year, I promise to be on time with this post :)