lizzy
“Throughout the 11 years of Lizzie’s
life, and despite over 100 seizure and
“stroke-like” episodes…Lizzie has grown
into a beautiful, happy, funny, stubborn,
determined and fearless young lady.”
Stories of Hope
Lizzie was born on June 8, 2000. The first person to suggest that something was
“different” about her was the duty nurse in the nursery. She noticed redness on the
left side of her face. The on-call pediatrician at the hospital mentioned the possibility
of “a rare syndrome which is typified by a port wine stain within the trigeminal area of
the face.” He explained that along with the birthmark, there would likely be glaucoma,
seizures and brain damage. When asked what seizures where, he said, “They basically
fry the brain.”
Okay, then…Thus began our journey of discovery. Instead of reading through
individual accounts found on the internet, we were incredibly fortunate to find and
contact the Sturge-Weber Foundation. Immediately, they gave one of the best pieces
of advice that we ever received: Find a family doctor/pediatrician who is willing to work
with (and refer us to) a “team” of specialists to help manage the myriad issues that are
often interconnected with this syndrome. The Foundation provided concrete information
that we could use to help chart a course of action, and offered support from their
compassionate staff, and a connection to an amazing internet (support group) family. We
can’t really imagine families who didn’t have the SWF to call when the diagnosis was
delivered. This year, the Foundation helped with travel expenses so that we could attend
our first Sturge-Weber International Conference in Orlando, Florida. Lizzie was finally
able to meet and get to know others with SWS, and we now feel more educated and
hopeful about her future! It was truly a wonderful experience for our family.
Another invaluable piece of advice came from an experienced SWF member.
He used the term “The Velvet Hammer Approach” to describe an effective way to deal
with medical and educational systems, and those who work for them and with us. You
have to remain rational and clear during all interactions because if you don’t, you lose a
measure of credibility; to make sure your ducks-are-in-a-row (questions are ready and
clear); and to make sure before you leave the appointment or meeting you get answers
that are understandable and can be followed up. And, above all, don’t take no for an
answer!
Throughout the 11 years of Lizzie’s life, and despite over 100 seizure and “strokelike” episodes, hospital stays, glaucoma surgeries, laser procedures to reduce the
size and thickness of her birthmark, hundreds of doctor visits, countless blood draws,
radiological procedures, and thousands of pills…Lizzie has grown into a beautiful,
happy, funny, stubborn, determined and fearless young lady. She is active in dance, Girl
Scouts, chorus, and swimming. When recently asked what she was afraid of, she replied,
“Nothing.”
Along with the staff at the Sturge Weber Foundation, the neurologist at the Kennedy
Krieger Institute, the ophthalmologist/surgeon at Children’s National Medical Center, who
saved her vision, and our local family doctor, who has so adeptly helped us navigate
her healthcare, Lizzie is blessed with another immeasurable gift. Her loving, patient and
devoted sister, Rosie, maybe more than any one person, prayer, or doctor, has helped
bring the light, strength and optimism that has helped shape who Lizzie is.
We like to remember the mantra of the doctors at Children’s National Medical
Center, who kept telling us when we so badly wanted answers, “Let’s see what she
shows us.”
No one can tell us what to expect, and that’s the hope and reason to keep believing
that anything is possible.
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