Aside from having consultations with doctors, lectures from specialist and workshops with other SWS families the 2011 Sturge-Weber Conference collaborated with a former NYC fashion photographer Rick Guidotti and his program Positive Exposure!
In a nut shell, Positive Exposure "support and promote human dignity through Positive Exposure's Spirit of Difference photographic image data bank and video interviews of persons, particularly children, living with genetic conditions." 
Brie having Sturge-Weber was asked to take part,
Rick's energy and enthusiasm was infectious,
he truly has a passion for showing the world the beauty in people's physical differences! 
We were thrilled to join in his cause, 
and even more thrilled to have these precious pictures of our sweet Brieto
Everyday I thank God for this little girl, Psalm 139:14 says "I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works"! Indeed I praise Him, because Brie is marvelous! Her outer beauty is apparent, but her inner beauty is still blossoming. Which is why it is a daily journey of faith for Robert and I to train this sweet girl in the way's of the Lord. It is our prayer that Brie would grow to love the Lord with all her heart and use this tool He has given her called Sturge-Weber to glorify God.
Which makes it even more difficult for Robert and I to decided whether or not to have surgery on Brie's cheek to lesson the appearance of her Port Wine Stain. Making decisions like this for my child, is the hardest part about being a parent. Thankfully, scripture is there to remind me in Jame 1, "(2)Consider it pure joy, my brother, whenever you face trials of many kinds...(5)If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him", so please join with me in praying for that wisdom. Our next few months are filled with doctor's appointments, surgeries and lots and lots of choices, without my relationship with Christ this mother would have gone crazy a long time ago. Thank you Lord for your beauty, wisdom and love!
we are praying for y'all daily. May God grant you wisdom and peace!
ReplyDeletewe are praying too! we know you'll make the best decision for Brie!
ReplyDeleteMaybe today your site will let me comment??? These pics are great! I tried time and time again to comment on your Disney pics, too, but the site would always lock up.
ReplyDelete~Mary
I am so proud of you and rejoice at how you've turned out to be such a wonderful and Godly woman and mother! I am familiar with having a child with something that I could either question God about continually or just use it as something to glorify God and know that He has a beautiful plan for these children! Brie is a beautiful little girl!
ReplyDeleteHi There - I wanted to reach out as I came across your beautiful Brie's picture while researching SWS. I had never heard of the condition until recently, which prompted my looking into it. I have PWS and when I saw Brie's picture i felt immediately drawn to her. Our marks are very similar! Mine is slightly larger but on the same side of the face and similarly positioned. Mine is slightly darker too in areas. Anyway, She is just beautiful and I wanted to say that my life turned out fantastic. I was never bullied and lived a very rich life full of tons of friends. I dated often, and met my husband shortly after high school. We have an 18 month old son and am now 30 years old. I could not be happier. PWS never held me back. If anything it encouraged me to be brighter and more outgoing. Just thought I would pass my experience along in case it would help in any way! Good luck raising your little girl!
ReplyDeleteHello! I had to reach out after coming across your beautiful Brie's photo. Your blog appeared when I was searching images of SWS. I have PWS and had never heard of SWS which prompted my research. When I saw Brie it was like looking at an old photo of myself. Her PWS is very similar to mine. Mine covers more of my nose and is darker in some spots. Anyway, I wanted to say that I lived a rich wonderful life filled with love and friends. I dated often, was in sports, plays, voted homecoming queen and more. I was never bullied and often forgot I even had a birthmark (as did people who know me). My birthmark only encouraged me to be more outgoing, outspoken and friendly. I met my husband shortly after high school and we have a beautiful 18 month old baby boy.
ReplyDeleteWhen I was younger I did have surgeries. It was different then and more painful. You were awake, in an excessive amount of pain, and scared. For that reason, I stopped after only 4 treatments. I never looked back and do NOT regret it at all. I do not cover my birthmark but have instead accepted it as who I am.
I felt compelled to share this with you just in case it helped you in any way. Your Brie is beautiful and I wish her all the happiness in the world. Take care!