christopher
Christopher was born four weeks premature on July 13, 2005. At birth his entire
face was all red and purple; they told us that it was a bruise or birthmark. We were
never informed of what Sturge-Weber syndrome was or what might happen until the
following day, the doctors came into the recovery room and told us that he was “a
strong little boy, different but strong.” I got the impression that the doctor was just as
unsure of the prognosis for Christopher as we were.
Christopher had his first Glaucoma surgery when he was 6 weeks old and his
second at 7 weeks. It was at that time that we were informed that Christopher had
bilateral Sturge-Weber syndrome in all aspects including brain involvement. Christopher
began having seizures when he was three months old, which were well controlled for
about a year. He has been on four medications to control his seizures which have all
been unsuccessful thus far. Christopher is currently having severe vision impairment,
“Christopher is our “little miracle man” he
has overcome so much during the last five
years and has touched the hearts of many.”
and was recently diagnosed as being legally blind in his right eye. Christopher has
undergone numerous eye surgeries and has been hospitalized for seizures and strokes
on too many occasions to count, at times I felt that I should start receiving my mail
at the hospital as it was more our home than our actual house was. Christopher has
re