brad
Back in 1988 and 1993, Brad Cunningham of Roodepoort , South Africa , was
in the local magazines and newspapers a lot.
Through the diligence of his mom, Trudi, Brad's story was put in front of the
public in newspapers and magazines throughout the region. Photos then show Brad
with his mom, dad Trevor and sister Danielle, his dog Mauser, his school chums, Mark
and Jeffrey, and his tennis coach.
Brad was born in 1985 with a PWS that covered most of his face. He
developed glaucoma at about 18 months of age. At the time of the articles, Brad had
already begun laser treatments, traveling to Geneva , Switzerland four or five times
before treatments were available in South Africa.
Photos at the time shows a smiling, determined kid sometimes wearing
sunglasses and a baseball cap. The articles were a big step in an attempt to reach and
educate insensitive adults. Trudi reported at the time that Brad's schoolmates were
appropriately inquisitive but not mean. When he told them his PWS was a birthmark,
they said, “Oh” and that was that. Adults encountered in public were another story.
His mom and dad had decided that it would not help him to be sheltered and
always told him "Yes, you look different., but you must learn to stand up for yourself."
In 1993, as a result of one magazine article, he became the student of a well known tennis coach who admired his determination and motivation.
Now, 10 years later, we visited Brad and his family via email as he is about to turn 18 years of age. This is Brad's letter to us.
In South Africa we have 12 grades before entering university, so next year will be my last school year. Our school year starts in January of every
year, and finishes in December. I am currently in grade 11 at Allen Glen High School . I take 7 subjects (only 6 are compulsory ). My subjects are
English, Afrikaans (a language similar to Dutch), Mathematics, Add Maths, Physical Science, Technika Electronics and Computer Science. I am currently
one of the top 3 achievers (academically) in our grade – my position varies between me and my two best friends (Mark is still one of them). My
average has not dropped below an "A", and I am hoping to keep it that way in the future.
I still play tennis, but not as seriously as in my earlier years, but still good enough to kick my dad's butt on the tennis court every so often. I now
play squash (similar to racquet-ball) for my school. This year I played at the number 2 position for my school's first team and for two years in a row I
have received half colors (the second most prized sports award given at school.)
Mauser my Labrador is sadly not with us anymore. He succumbed to old age. He has been replaced by Teddy, a Cocker Spaniel/Labrador and
Lia, a German Shepherd (alias "Hell-Hound") who thinks I am her chew toy – her teeth marks on my forearms can attest to that!
I have a part-time job as well. I work at a Science and Experiment shop near my house where I have been working for almost a year now. It is a
shop that specializes in science and electronic equipment and I help people with anything I can, assisting with school projects for persons coming to
the shop most of my working hours.
Dealing with public reaction really hasn't been too difficult for me. I learned a long time ago not to care what people who don't know me think
of me, and this has helped. I don't really get hassled too much by long glares, and most people just ask me about my face - a question that really
doesn't bug me, they hear the answer, and carry on in their own ways.
I have been with my best friend Mark ever since I can remember (we started together at kindergarten) and we are even in the same high-school.
He continues being my best friend. I still speak to Jeffrey, but we have drifted apart over the years.
After school I hope to become a computer programmer. Programming has become a hobby for me and I can see myself still doing it 20 years
from now.
On the Sturge-Weber side – God has been good to me.
I no longer suffer from epilepsy and have been off my medication for almost 2 years now. My eyesight has remained stable over the years due to
continued surgery (the last surgery was in August last year) . Although the surgery may seem extreme and daunting, it really does work. I can vouch
for that!
It is quite an honor to be asked for my input about a disease that plagues so many and I hope to help inspire all those that suffer from it in any way
I can.
Stories of Hope
7