Monday, May 15, 2006

Day of Awareness- Vascular Birthmarks




Well today is offically the Day of Awareness for the Vascular Birthmarks Foundation- and I am doing my part. Smart baby (almost 1 yr) was born with a port wine stain (PWS) on his forehead. I diagnosed it before the pediatrician (probably due ot the fact that i saw many vascular lesions in my medical missions with Operation Smile) I had him in for a consult and he began treatment at 4 mo. Since then we trek to a great derm laser doc every 6 six weeks for a pulsed dye laser treatment. To date he has had 6 treatments, and we are so pleased with his response. His PWS is relatively small, light in color, and easy to treat. Many others are far more extensive, vary widely in color, and often may not respond well to treatment.

The VBF is a great organization that educates, and provides resources to individuals and families with vascular birthmarks. I volunteer my time as a CCLS and serve on their "expert" panel as the Developmental Specialist. I presented at their conference in CA last year and can't wait to conduct roundatables for families at the Boston conference this year. I enjoy answering questions sent by parents and individuals with PWS and addressing coping and psychosocial/emotional issues both for the VBF and birthmarks.com.

Linda, the founder of the VBF told me how she thanks God that her daughter was born with a hemangioma. Truly, from that experience, she has written books, conducted research and started this foundation which helps hundreds of thousands of families each year. Something that others would consider a tragedy has truly changed the world for good. I too consider myself blessed to have a son with a PWS. It has helped me view the world with greater clarity, and also helped me use my skills to do a greater good in the world. (smart son (5yr) and I also donate artwork in honor of smart baby for their annual polo event--you are never too young to make a diiference!)

So today I want to raise awareness...one visible differences are just just that. In my work in the VBF community, I have come to meet many wonderful people who have dealt with some challenging things. Years of staring, rude comments, teasing, difficult treatments, ostracism, physical hardships (vascular lesions are often associated with other more complex syndromes) and even parental abadonment. I honor them and their experiences.

And today I honor my smart baby for changing my life for good!

14 comments:

Lei said...

Wow, Les - how unique an opportunity to use your expertise on your own child!

Valarie said...

What a great perspective. Thanks for sharing that. I was so relieved when they determined that my son's nevus was non-vascular. It was still an ordeal to go through the removal process. Part of the reason we did that was the teasing and ostracism you mentioned- aside from the inherent cancer risk.

Praying for your Prodigal said...

Love your perspective! Our 2nd child developed Tourette's Syndrome as a youngster....we had an education of our own with that! The bottom line--a parent MUST advocate for their children...and love them...no matter what comes their way! It's easy for some.....can't imagine any other way however.

God Bless!

Diane

itybtyfrog said...

What a cute boy!!! Two of my daughters also have these birthmarks. My 5-year old has one on the back of her head, and my 3-year old has one on the back of her calf. I have always been so grateful that they have been in indiscreet areas. Way to go with all your work to raise awareness!

Rachelle said...

Thank you for sharing this. It's a great resource for anybody who has a child with birthmarks. I learned a lot reading this today!

The Constant Gardener said...

This is great! I didn't know any of that...

Zoe said...

Wow, I didn't know that they had actual days for these things! You know, Asher was actually born with rather dark stork bites on his face. He also had (about a 1/4 size) a raspberry patch on his head. People seriously used to come up to me and ask me if I dropped him . . . on his head! How naive can you be?!

I didn't know that you had worked in Operation Smile. That is cool too. My husband was born with a cleft lip and palette. I must admit that I do worry about my children being born with this. Also with severe birth marks. However, I have since learned that there are much worse things in life. And really, it doesn't even matter because you (I) love my little babies no matter what. Plus, you know what, with Asher having autism, I also realize that these children come with their own little packaged deals. I wouldn't trade them for the world! Thanks for giving me something to think about!

Gabriela said...

I'm so impressed your involvement in this issue. Way to not just watch from the side-lines. You ARE a smart mama! (and your little guy is so cute) :)

Stephanie said...

I would love to have as much passion as you do for such a good cause.

You truly are a saint!

handiemom said...

Wow! Thanks for the information. Two of my children have birthmarks, but luckily haven't required treatment for them. It was very interesting to read about all your experiences with this!

Cute baby too!

ubercyl said...

He is such a gorgeous boy.

I clicked on the link and my heart went out to baby Kristin--I can't imagine how she ate or even breathed! I didn't know anything about this. Thanks for educating me. I thought birthmarks were mostly stork bites like Gonzo has on his eye and the back of his neck.

lackrik said...

That's so great of you! I was born with a birthmark on my leg and it was such a struggle for me growing up. I had it lasered off a couple of years ago. It's amazing how far science has come!

Thanks for sharing your story!

Kara Elmore said...

That was beautiful! Thank you for sharing that with us. You are a truly gifted person to give so much - you have received a wonderful gift in return- your son!

Char said...

Les, I wonder if I might get your expert opinion on a birthmark(?) my little one has. Mind if I email you some pics some time?