When Matthew was just 6 weeks old, a magnetic resonance imaging (MRI) scan showed excessive blood vessel growth on the surface of his brain that was causing abnormal function. The scan confirmed Sturge-Weber Syndrome.
“When your child is born, you don’t expect something like this. Michael and I were devastated,” says Michele. “You want your kids to have every opportunity in life, and we were afraid our son’s opportunities would be limited.”
A parent's search
Even before they were certain that Matthew had Sturge-Weber Syndrome, his family began looking for treatments for the birthmark on his face. When he was only 3 weeks old, they met with Ana Duarte, MD, FAAD, Director of the Division of Dermatology at Nicklaus Children's Hospital, formerly Miami Children's Hospital, and one of only 89 board-certified pediatric dermatologists in the United States. Dr. Duarte told the Matthew and his parents that he would benefit from vascular dye laser surgery.
“Laser surgery has been used to treat port wine stains for over a decade now and has made a very significant difference in the affected children’s lives,” says Dr. Duarte. “The earlier laser surgery is started, the more effective and successful the results, and children with fair skin tend to do quite well. Matthew was very young with a fair complexion, so I felt his prognosis was promising.”
The day after his first appointment, Matthew and his parents went back to Dr. Duarte’s office where she performed pulsed dye laser surgery on his face while Michele held him in her arms. Matthew would need treatments about every six weeks, which meant long drives for the family, who live in Clearwater. In the end, however, it was worth it—after 26 treatments over three years, Matthew’s birthmark is virtually gone.
“Matthew looks fantastic,” Michele says. “We have gone to great lengths to get to Miami, and it’s been well worth every mile we have traveled.”
A bright future
As a result of Sturge-Weber Syndrome, Matthew still has much to overcome. He is on medication for his seizures and glaucoma. Additionally, he has developmental delays, which have required speech, occupational and physical therapy. With the bright red mark gone, however, that Matthew's family are optimistic about his future.
“Many people with Sturge-Weber Syndrome have lived normal lives,” says Michele. “That’s what we’ve always wanted for Matthew, and we are so thankful we found Dr. Duarte because she has made this possible.”