Have you heard of Sturge-Weber Syndrome?

This is Colton. He is just a few weeks younger than Audrey. This little peanut is the son of my neighbor Emilee's dear childhood friend. He has Sturge-Weber Syndrome.

Sturge-Weber is a vascular disorder where your body makes more blood vessels than it can handle, including on the brain. Someone that has it is characterized by a port wine stain on their face. Baby Colton seems to have it pretty bad. While I don't know his exact severity, it can cause eye and internal organ irregularities and lead to glaucoma and he may even have to have brain surgery to manage seizures.

Imagine being a baby and not being able to communicate where your pain is coming from. Imagine being a new parent and feeling helpless. I feel lucky to have two healthy kids. I to want to raise my children so that they can understand and be compassionate towards those who have a sickness or a handicap. I also want to raise my kids to be thankful for the healthy body that they've been given and treat it with respect.

I had never heard of Sturge-Weber until today, but I have seen (and know) some folks that have the port wine stains on their body. Now I understand a little bit where the marks come from.

In an effort to bring awareness to Colton's situation and the syndrome, Emilee started up a blog found here: http://togetherforcolten.wordpress.com/

There's also more info about Sturge-Weber here: http://www.sturge-weber.org

Thanks Emilee for sharing this with me, and I hope that anyone who reads this will at least keep Colton and his family in their thoughts as they vie to get the best care possible for their little guy.