katie
Katie, our daughter, is almost nine years old and has Sturge-Weber syndrome.
She was diagnosed shortly after birth. She doesn’t let it get her down, most of the
time. What annoys her are stares and silly questions like “what happened to your face
honey?” or “did you get hit in the face?” which she gets quite often. She would prefer
they ask her straight out why her face is red. She learned at an early age that not all
people are kind, but she has also learned to deal with it (better than her mom and dad).
Except for doctor’s appointments, medicine, and laser treatments, Katie leads the life
of a regular nine year old. She has many friends, does well in school, and participates in
many activities such as karate, swimming and dance. She wants to go to the University
of Kansas-she loves those Jayhawks!
“We went to our first SWS conference
this past summer... Katie has never been
around others with SWS for any length of
time.”
We went to our first SWS conference this past summer. We brought back so much
useful information, but the best part was that Katie made many new friends. Katie has
never been around others with SWS for any length of time. It was comforting for her
to not be the only one. She was just starting to wear make-up to hide the redness and
now she hardly uses it at all.
It’s a new school year with new issues. We don’t know what the future holds
medically for Katie, but we do know she will be just fine in any endeavor she attempts
because she is secure with who she is and what she has. Her future looks very bright.
Stories of Hope
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