sydney
Meet Sydney. Our little 4-year old is cute, funny, social and can we say a tad
dramatic. Her likes include Dora, Strawberry Shortcake, zebras and her older brother,
Ryne. Her dislikes include Santa, the Easter Bunny, getting her hair brushed and
ketchup. Sydney’s story sounds like so many of her fellow Sturge-Weber friends. She
was born on April 6, 2006 and little did we know what started out as a bruise on her
face would turn into so much more. From the moment the nurse came into our room
and said the redness on Syd’s face was a port wine stain and not just a bruise, our lives
have truly never been the same.
Our wonderful pediatrician, Dr. Rosa, came into our room that night and warned us
that there was a chance she could have a syndrome that sometimes accompanies port
wine stains called Sturge-Weber but tried to reassure us that we would cross that bridge
if we had to. We hoped for the best and prayed we wouldn’t have to learn what SturgeWeber was but unfortunately Sydney had her first focal seizure in May when she was
just over a month old. An MRI in June would confirm our fear and diagnose her with
SWS. Syd’s diagnosis was extremely hard to accept. This is the kind of thing that only
happens to other families, not yours.
Dr. Rosa referred us to St. Louis Children’s Hospital and when Sydney was only
two weeks old she met her pediatric dermatologist, Dr. Bayliss, and her pediatric
ophthalmologist, Dr. Lueder, for the first time. An eye exam under anesthesia would
show that Syd had glaucoma in her left eye. For the next two years of her life, the
2½ hour trip to St. Louis would become a regular occurrence. The laser treatments
began that August when she was only 4 months old. Now four years later, Sydney has
undergone two glaucoma surgeries, two strabismus surgeries, sixteen laser treatments
and numerous MRI’s, PET scans, and eye exams under anesthesia.
We feel truly blessed to be surrounded by our wonderful families, friends, doctors,
co-workers and employers. These people have been so supportive of Sydney from the
beginning and we wouldn’t be able to get through this without them. Some days are still
harder than others but having a strong support system makes all the difference.
We are also grateful to the Sturge-Weber Foundation. We don’t even want to think
about where we would be without them. After reading a copy of Branching Out a few
years ago, we decided to enroll Syd in the Sturge-Weber study being conducted by Dr.
Juhasz and Dr. Chugani at the Detroit Children’s Hospital in Michigan. We learned more
from the doctors there than we could have ever hoped for. The entire staff working with
the study is wonderful and we are so thankful to them for what they did for our family.
We strongly encourage other SWS families to take part in that study.
We are very thankful that Tegretol keeps Sydney’s seizures under control. She
has minor speech delays but other than that is developing right on schedule. She was
enrolled in our school district’s Early Learning Program when she turned 3 and attends
pre-school daily. Her favorite part of school is riding the bus but we won’t tell her
teachers that. Syd tried t-ball and swim lessons for the first time this past summer and
we know this is just the beginning of what she is capable of.
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“We are also grateful to the Sturge-Weber
Foundation. We don’t even want to think
about where we would be without them.”
The Sturge-Weber Foundation