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THEĹ‘LEADERĆ NET

An award-winning weekly serving Northwest Wisconsin since 1933

Zoey’s amazing journey

Seizures, four brain surgeries and now a princess

by Greg Marsten Leader staff writer SOMERSET – Zoey Marin Bemis turns 12 years old later this month which, in retrospect, is pretty noteworthy. But she is quick to tell you that she really celebrates two birthdays. “I also have a birthday for my surgery, my surgery on my brain,� she said matter-of-factly, while playing with an iPad, watching a cartoon and petting her cat. “That’s in December. It’s my hemi-birthday.� The fact that Zoey has any birthdays at all is both a miracle and a dark, sad trip down one of the strangest and most troubling decisions parents could ever make. You see, Zoey’s “hemi-birthday� notes the winter date over seven years ago when she had a surgery to have half of her brain disconnected, on purpose.

3ULQFHVV =RH\ “Let me show you my crown!â€? Zoey says without a stutter, running into her bedroom with a slight limp. She emerges with a crown, two sashes, a baton, a few small plastic toys and a curious wooden game called Kendama. She assembles the toys on the kitchen table, all with her very coordinated left hand, which she calls Lefty, and shows KRZ VKH FDQ Ă LS WKH EDOO LQWR WKH FXS shaped carved game. Her Lefty coordination is pretty impressive, and the Kendama skill is a test for even the most patient adult, and Zoey is pretty proud of it. She swings the ball around on a string and, somehow, manages to settle the ball into the cupped wood. “Like that. You wanna try?â€? she said, repeating the task twice to show how it’s done. Within a few minutes she has played the Kendama game, talked about her new cat, showed how she makes puzzles on her iPad, mentions friends at school, talks a bit about her numerous surgeries and dwells on her dog, Charlie. “He’s part Yorkie, part poodle and part Chihuahua,â€? she said. “I call him a Yorkie-pooh-wawa! He can run fast, like a cheetah.â€? She laughs and runs off, like a cheetah, to her iPad and homework. Her little girl giggle is infectious and a gift, once you know her tale. =RH\ V KLVWRU\ Zoey’s journey to becoming a laughing, playing little princess is a path laden with pain, rarities, dreaded decisions and patience most parents could never believe, let alone endure. The painful reality of her path to this quaint, earth-tone Somerset town house has included four brain surgeries, months in hospitals, batteries of tests, EEGs, shots, tubes, IVs, electrodes, drainage shunts in her skull, probably gallons of medicine and more painful procedures for one little girl than would usually be seen by

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5( LV D UDUH EDIĂ LQJ QHXURORJLFDO GLVease without a known cause. Its effects are profound, and it causes intractable epilepWLF VHL]XUHV FRJQLWLYH GHĂ€FLWV DQG SDUDO\sis of half the body. One thing that makes the disease so unusual is that it affects one hemisphere of the brain, and while GRFWRUV Ă€JXUHG RXW LW ZDV WKH OHIW VLGH LQ Zoey’s case, they weren’t entirely sure if that was the critical side, at that time in her development. “They suspected her left (hemisphere ) was her wheelhouse,â€? Josie said. “It was the part driving the ship, her dominant side.â€? Using elaborate and painful brain and QHUYH WHVWV WKH\ FRQĂ€UPHG WKDW IHDU WKDW the half of her brain with the RE was her dominant side, and they weren’t entirely sure what the long- and short-term consequences would mean. Research into RE is slim, but even the recently created RE Foundation noted that the disease’s process “... typically runs its course over a one- to two-year period, during which time one half of the body is rendered useless — hemiplegia — and epileptic seizures continue unabated.â€? Josie said there was a possibility that the disease would run its course. “It could possibly burn out, but it takes a long time, goes through a lot of brain tissue and causes damage to the good tissue,â€? she said with a long breath, noting that they didn’t have the time to watch their child fade away. “We had to do something.â€?

7KH GHFLVLRQ By then, the seizures were becoming so common that parents Dan and Josie had

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=RH\ LV VHHQ KHUH LQ VKRUWO\ DIWHU RQH RI KHU PXOWLSOH EUDLQ VXUJHULHV %HVLGH KHU LV |3XSSXS } WKH VWXIIHG GRJ WR\ WKDW VWLOO KDQJV RQ KHU DUP 6SHFLDO SKRWRV ,16(7 3+272 =RH\ %HPLV KDV HQGXUHG SDLQ WKRXVDQGV RI VHL]XUHV PXOWLSOH EUDLQ VXUJHULHV JDOORQV RI PHGLFLQH SDLQIXO SURFHGXUHV DQG KXQGUHGV RI QLJKWV LQ KRVSLWDOV EXW VWLOO KDV RQH RI WKH PRVW LQIHFWLRXV VPLOHV DURXQG contorted her face and body, blocking out her memory of the “It was about event. It led to extensive testing choosing to give your and MRIs, where doctors originally diagnosed her as having a child a disability, or brain tumor. As she was about to have surwatch her dwindle into gery, a readout that morning whatever happens,â€? showed there was no tumor after all. But her seizures remained, Josie said. and began to be commonplace, ramping up to 30 a day. As that seizure frequency increased, anan entire neighborhood of people over a swers and speculation started to lifetime. move into the unusual and alThe issues began in the fall of 2004, most unheard of. when Zoey was just a few years old. She The questions were testing EHFDPH YHU\ VLFN YRPLWLQJ Ă X OLNH DQG even the most storied specialists. never seeming to recover. With some PHGLFDWLRQ KHU ´à XÂľ EHJDQ WR IDGH %XW 5DVPXVVHQ V HQFHSKDOLWLV by January 2005, she began to have 15Batteries of tests, procedures, to 20-second episodes, where she would =RH\ VKRUWO\ DIWHU FRPLQJ RXW RI KHU EUDLQ VXUJHU\ brain “griddingâ€? and specialists slur her speech and could not maintain Ă€QDOO\ GLDJQRVHG =RH\ ZLWK WKH VHYHQ \HDUV DJR =RH\ V PRWKHU XVHV WKLV SKRWR DV D eye contact. In a few weeks, she started ultrarare Rasmussen’s encepha- |EDVHOLQH} RI VRUWV WR FRPSDUH KHU SURJUHVV RYHU WKH having full-on, complex seizures, which litis in July 2005. \HDUV

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