On February 6, 1996, Samantha gave birth to our first child, Noah. As soon as he was born, we were shocked to see that he was born with a vascular birthmark called a Port Wine Stain (PWS). We had never heard of this. Our excitement was immediately changed to superficial feelings related to his appearance. Later we began to feel guilty that we were so concerned about how he looked. We began to cope with it and were thankful that he was otherwise healthy.

The next morning, the pediatrician came in and told us that there was something called Sturge Weber Syndrome (SWS) associated with people born with PWS. The symptoms could range from the obvious aesthetic part, to seizures, and in severe cases, mental retardation and glaucoma. The doctor scheduled a consultation with a neurologist, and an ophthalmologist. Noah’s ocular pressures were normal, but the doctor told us it was important to have them checked on a regular basis.

The neurologist told us that Noah seemed to be a normal baby, but that his feeling was that he had an 80% chance of developing symptoms from SWS. We were devastated. We were on an emotional roller coaster. We began to learn all we could about SWS and PWS.

We searched the internet, consulted local physicians, and friends who were doctors in different parts of the country. We also consulted parents of other children who were born with a PWS. While we were doing this, our pediatrician told us to love our son and treat him like a normal baby and not to pursue cosmetic treatment, or neurologists for the SWS because we could not do anything about it if he had SWS.

We did not agree. Noah is our son and we had to do what we felt was best. The truth was, the pediatrician knew very little about SWS, or treatments for PWS. Our search brought us to two doctors, Dr. Bernard Maria, who is studying SWS at the University of Florida, and Dr. Roy Geronemus, one of the world leaders in laser treatments of vascular abnormalities.

Dr. Maria suggested we see him when Noah was 4 months of age. He examined Noah and was not comfortable with his neurological development. We were shocked, because as far as we could observe he was a normal 4 month old. Dr. Maria suggested an MRI of Noah’s brain. The MRI showed no evidence of calcification, a sign of SWS. He told us that he had developed a test for SWS that Noah could have at 1 year of age that would give us a good idea as to whether or not he had SWS. The test, as I understand it, measures how glucose is metabolized by the brain. We decided not to have the test because it would expose him to some radiation, and if it were positive, there was nothing we could do anyway. Noah seemed fine, so we decided to live life one day at a time. 

When Noah was 1 week old we contacted Dr. Geronemus. We sent him photos of Noah. He responded to us promptly and told us that he felt he could make a dramatic difference in Noah’s appearance. That was the best thing we had heard, and boy did we need some positive news at
that time.

We began flying Noah to New York every three weeks for treatments with Dr. Geronemus. The results are incredible. The stain is by no means gone, but it continues to improve. The lighter it gets, the smaller the increments of improvement are. He had 16 treatments to date and we are thrilled. We will continue as long as there is improvement. We feel that with the improving technology, the final results will be fantastic although it might take time.

Obviously, it is difficult not only to put your baby through this, but it is also very hard to travel long distances with him for medical treatment. My wife, Sam has done this alone on all but 2 of the trips. She has been incredible. I am sure that Noah will be glad that we did all of this even though it is painful for him now. He will not remember these experiences early in his life, and I am sure it will save him from being exposed to the teasing of other children at school.

Noah has been a complete joy. He has an incredible winning personality and a very easy going
disposition.. He has changed our life in so many ways, as all children do, but he has also opened our eyes to what is important in life. The most important thing is health. We were as guilty as anyone about being superficial toward peoples’ differences, but he has changed all that.

At the time of this update Noah is a beautiful 1 year old active little boy, he brings us happiness every day. We have learned a tremendous amount about SWS and PWS, I believe we have taught a lot about it to Noah’s doctors. Please feel free to contact us if we can answer any questions, or give any support regarding SWS, PWS, or related experiences.

At the time of this update, Noah is 2 1/2 years old and he is doing great. He has had 26 treatments to date, the last 6 with the Sclero Plus laser by Candella. He continues to be free of any symptoms relating to SWS. We continue to have his eyes checked on a regular basis. He is engaged to be married to a really cute 3 year old; we are so happy.(just kidding!) On July 13, 1998, we became the proud parents of Jenna Carly. Jenna does not have a PWS or any other birthmarks, although there does not seem to be a genetic reason for PWS, we were nervous about it.

Noah is now 5 ½ years old. We have taken a break from treatments over the last 9 months; we plan to begin again in October. Noah's PWS continues to look better than we imagined it ever would. He has had 35 treatments so far and we will continue as long as we see improvement. Noah will begin kindergarten in the fall; we are expecting this to be the year when children begin asking questions about his PWS. The few times children have asked, he has handled it very well. As far as he is concerned, it is just his birthmark. Noah is growing up to be an incredible young man. He is fun, loving, and polite and has a great sense of humor! He shows no signs of SWS. Jenna is 3 years old now. While Noah is my buddy, she is my sweetie. She is very bright; with her incredible vocabulary she keeps us smiling.

It has been quite awhile since I last updated Noah's progress. Noah is 81/2 years of age now. He has had in the neighborhood of 50 laser treatments to date. We think he looks great! The PWS is in my estimate 80% lighter than it was at birth. The improvement has been extraordinary and has exceeded our expectations. Noah continues to see Dr. Geronemus 2-3 times per year. These continuing treatments keep the PWS at its current level, I am sure Noah will continue the treatments periodically for the rest of his life.

We have been very fortunate that Noah has not experienced any neurological effects from Sturge Weber Syndrome as a result of his birthmark. He was diagnosed with glaucoma in his right eye; this was caught early and is under control with medication. We cannot stress enough the importance of regular eye check ups if a PWS involves the eye. His right arm is slightly larger than his left. This is due to the increased blood flow from the PWS and could be considered a symptom of Klippel Trenaunay syndrome. He has had no medical issues because of this and has absolutely no problems with his arm or hand.

Noah is an incredible child. He is extremely warm and caring, he does very well in school and LOVES sports. He has not experienced any negativity as a result of his birthmark. Some children have asked about it, he simply explains what it is and that has been the end of it. Some have even commented that it is "awesome"! He has handled the frequent trips to New York very well, which has made it possible for us to continue. Even when he and his mother were caught in the blackout, he remained calm and kept his mother under control!

We thank all of you who have sent us e-mails over the years. Feel free to contact us anytime if you have any questions, comments, or just want to hear from someone who has been through it.