This website is dedicated to our daughter Gabrielle who has a Port Wine Stein Birthmark (PWS).  Gabby was born on May 24, 2000 and the doctor insisted it was a bruise.  After two days the doctor finally told us the truth that it was a vascular birthmark.  We had never heard of PWS before and to be honest we were concerned.  At one week of age the doctor ordered an MRI to be done to determine the severity of the birthmark. Thankfully it wasn’t on her brain and it was determined that she didn’t have Sturge Webber Syndrome.  Our doctor told us that it would probably go away on its own, but we didn’t believe our doctor, after all it was very dark almost purple in color for the first few days.  

    Researching on the Internet we discovered a lot of things about PWS. After researching the pro's and con's we opted to have it surgically removed. We went to our pediatrician who referred us to a doctor in our area.  That doctor assured us that he could remove it and that the insurance company would pay.  After four attempts to get it approved and it being denied, Russ looked online to find any codes to make the insurance pay.  While looking we discovered a story about a woman who’s son had a PWS.  She like us couldn’t afford the $3000.00 it costs to do each surgery and was approached by a Shriner who gave her a number to apply for treatment from the Shriners Hospitals.  We called the number that day which was in September of 2002.  Joseph Costas was the gentleman that processed our application and we were approved within one month.  Paula Bono, who is the clinic secretary, called on October 13, 2002 and gave us the most wonderful news that they would be more than happy to do our surgeries at no cost to us (except for transportation and lodging).  To say we were overjoyed doesn’t describe how we felt.  We were able to find a Shriner in our area who has been a constant support system and  a great friend.  That wonderful gentleman is Jay Schweer and without his support we wouldn't be able to get through this.

    We called the doctor in our area and informed him of what our decision was.  He was positive that applying for our insurance to pay for it again would get it covered.  Once again the insurance company denied us.  Our first surgery was scheduled for December 13^th.  We were able to get free plane tickets through American Airlines programs Miles For Kids.  Gabby and I (Jennifer) spent three days in Boston.  Our clinic appointment was on December 11^th, and the day between clinic and surgery day we visited the aquarium.  We absolutely enjoyed ourselves in Boston and the staff at the hospital made us feel completely at home.  Sandy Mullen, the care coordinator secretary, was able to help us with our hotels, and transportation.  The entire hospital staff at the Shriners Hospital went above and beyond the call of duty. 

          Gabby’s first surgery was very successful with a low amount of stress involved.  It was more stressful for me than it was for her.  When she came out of surgery the nurses prepared me that her birthmark would be purple in color.  I expected it to be worse than it was, and when it wasn’t as black and blue I was rather relieved.  When we flew home we got a lot of strange looks, but we explained everything and Gabby even told people that she had surgery that day.  Russ was very shocked when he met us at the airport, but that was due almost entirely to the fact that the cream was applied so heavily on Gabby's face that her hair was all matted down and her face was so shiny, but he kept his emotions and treated Gabby as if nothing had changed.  Elisabeth (Gabby's big sister) only being four handled it better than other people who saw it.  She gave her sister a hug and told her she missed and loved her.  I have never been more proud of my family.

          Our second surgery was scheduled for March 21^st.  Russ was able to go with us this time.  He was very impressed with the staff.  Gabby did even better this time with her surgery.  She laid down on the operating table and went to sleep with out any problems.  Dr. Donelan (our plastic surgeon) was very impressed with her progress and the difference in one surgery.  He stated that there was a 35% improvement after only one surgery.  That gave us hope.  This time her face wasn’t as purple with the second surgery.  Once again the staff surpassed our expectations.  Paula Bono, Danielle, and Sandy Mullen made Gabby so at home that she can’t wait to go again. 

          Our next surgery is on July 18^th and this time we will make it a family affair.  Our oldest daughter Elisabeth will be going with us and we will be able to show her what it is like.  I fully expect that we will have an even better time in July.

    I cannot express the gratitude and adoration I have for the entire staff of  the Shriners hospital.  I speak with Sandy Mullen on almost a weekly basis, and she never makes me feel as if I am annoying her.  Sandy Mullen and Paula Bono have become like family to us and if  it weren't for their support we would not be able to get through these trying times.

    As a mother at times I feel extremely guilty about her birthmark, but I know there was nothing I could have done to prevent it.  It sounds almost ridiculous to say that after all I could never have known while I was carrying her, but as a mother I feel that strong desire to protect my children.  I don’t want either one of my children to ever feel that they aren’t good enough to do things, or that they aren’t beautiful.  God gave Gabby this birthmark and if it weren’t for the consequences that could happen to her later in the future we wouldn’t be doing these surgeries.  

    I hope that you have enjoyed this website.  Please if you know anyone with a birthmark of any type pass along this information so that they will know they aren’t alone.  That is the only thing I can say about this we feel alone quite a lot, but meeting and talking with other people out there with birthmarks helps us to know that we aren’t alone.  

    Just a quick update for everyone.  Gabby had her fourth surgery May 21 of 2004.  Once again everything went terrific.  The doctors still aren't able to tell us how many more she has to have.  

    Gabby is going for her 5th surgery November 19, 2004.  We are looking forward to going to the aquarium again.  She loves it there, especially Myrtle the Turtle.  

Thank you again for taking time to look at our site.  Don't forget to leave a comment so we know you were here.