paige
We would like to introduce you to our spunky, little “bundle of energy”, Paige. She
came into our lives in June of 2002 and was absolutely beautiful! She was born with
a fairly light, but quite extensive port wine birthmark on her head, face, neck, arm, and
leg. We were shocked and frightened to hear that she may have a condition called
Sturge-Weber syndrome. Paige had an MRI as an infant and it did not show any brain
involvement. We breathed a sigh of relief, but still watched her closely. Over the years,
Paige met all of her milestones and was developing normally. We were thankful that we
only had to deal with the “cosmetic issue” of laser treatments to lighten her birthmark.
(She has had about 15 treatments since the age of 6 months.)
Fast forward to August 31, 2008…it was Labor Day weekend and we were
spending the weekend at Grandpa’s lake house three hours away from home. Paige
“It has been two years since Paige was
officially diagnosed with Sturge-Weber
syndrome. We are so blessed that she has
remained seizure-free since leaving the
hospital.”
became ill while watching the holiday fireworks display. She ran a fever and vomited
through the night. We made the decision to go home the next day and her condition
worsened. We headed straight to the emergency room. Paige suffered a stroke-like
episode and ended up spending 19 days in the PICU. She was unable to speak,
move her right side, walk, or sit up. It was during this time that Paige had 3 seizures
and was officially diagnosed with Sturge-Weber syndrome. That is when the REAL
journey began…just two short weeks after starting kindergarten! Paige gained her
physical abilities back rather quickly, but went through speech therapy for six months.
She suffered from speech aphasia and short term memory loss which required her to
re-learn many things. We were amazed by her patience, determination, and sense of
humor through it all.
It has been two years since Paige was officially diagnosed with Sturge-Weber
syndrome. We are so blessed that she has remained seizure-free since leaving the
hospital. She is a typical 8 year-old and keeps us very busy (along with her big
brother, Kyle). She is filled with confidence and loves to be the center of attention
(which sometimes annoys her brother). Paige is always on the move. She is involved
in Brownies, gymnastics, soccer, and various school clubs. She loves playing with her
friends, putting on dance shows, and wants to be a teacher when she grows up. We are
so proud of how Paige handles her condition and she never lets it get her down. This
journey has taught our family what is truly important and we are confident Paige is going
to do great things with her life…she already has!
Stories of Hope
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