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...and I have been able to reach adulthood, raise three children and become a grandmother to four...with all the celebrations, events, joys and sadness that come with my 58 years.

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Keeping a promise to Jana

Illness has robbed her of control over her body - and of life's many firsts. But she holds onto one treasured goal.
(Bethlehem, PA)

By Steve Esack Of The Morning Call
http://www.mcall.com:80/news/local/a...tory?track=rss

The teenager, lost in her music, reclines on the La-Z-Boy in the family room as her mother and a nurse scramble to ready her for school.

''Which earrings do you want this morning?'' her mother asks. But the high school senior, headphones over her ears, ignores her.

Her mother chooses the earrings and reaches for mascara and lipstick.

''What 18-year-old wants to go to school without makeup on?'' she asks, applying a touch of color to her daughter's pale face.

Her father carries three school bags -- one with his daughter's books, one with her food and medication, one with a $7,000 communication device-- to his Toyota Camry as the teen leans on her mother and nurse for the short walk from rancher to driveway. The teen, headstrong and determined as always, nudges shut the car door her father left open.

''You going to open the door yourself?'' her mom asks. The teen turns her head, but no words come out. She reaches shakily for the handle and misses, over and over again, until her hot-pink nails finally clip the handle and she is able to pull.

''Atta girl, Bo,'' her father cheers, using her nickname. The drill has become routine for Judy and Ken Seagreaves of Bethlehem Township since a mysterious, untreatable medical horror began attacking their youngest child's brain five years ago. And every time they go through it, they come closer to fulfilling a promise of helping Jana graduate from Freedom High School. In two days, that promise will be kept, ending a journey that has tested the resolve of a family, strengthened the commitment of educators and stretched the bounds of medical science.

Jana was tough, comical, independent. When the boys in her neighborhood plotted to exclude her from a baseball game because she hit as well or better than they, Jana played anyway. When a boy knocked over her bike, Jana didn't tattle. She knocked over his bike.

Oh, Jana was fast. Ornery. And wickedly funny, a trait she inherited from her father, who once had the family wear Groucho Marx masks for a Christmas photo. Jana refined that trait by watching her comedic idol on reruns of ''I Love Lucy.''

With her siblings, Megan, now 26, and Ken Jr., 21, Jana tolerated her father's tradition of filming every first day of school. Like Megan and Ken Jr., she landed in Bethlehem Area School District's special education program for intellectually gifted students.

''School was my life,'' Jana wrote -- when she could still write -- last year in a six-paragraph memoir, ''About Me,'' for her parents.

By seventh grade at East Hills Middle School, Jana was blossoming into a pretty brown-haired, green-eyed teenager. But beneath her glowing exterior, part of her brain was dying. And Jana would likely never have a first date.

In the middle of the brain are a collection of nerve cells called the basal ganglia. Inside the basal ganglia, near where the brain meets its stem, is the substantia nigra. The basal ganglia and substantia nigra work together, like a bike's pedals, chain and tire, to produce dopamine, which tells the body how fast or slow to go. The faster a person moves, the faster the substantia nigra pedals dopamine along a chain to the basal ganglia. When the substantia nigra's cells die, dopamine production slackens. Then, like a slowing bike, a wobble develops, a characteristic sign of what later can be diagnosed as Parkinson's disease if the symptoms follow a certain progressive path. The average age for physical symptoms to show in Parkinson's is 60. Jana's appeared at 13.

In May 2002, Jana, an aspiring journalist and writer, started complaining about her right hand. It was just writer's cramp, Judy told her. At about the same time, Jana's voice started getting softer.

Halfway through the family's annual August vacation in Ocean City, N.J., her parents took a closer look at Jana.

''I can still remember that day,'' Judy said. ''Jana was wearing her blue two-piece bathing suit.''

When Judy asked her daughter why she hadn't written postcards, Jana, said she couldn't. She held up her hand, and for the first time Judy saw that Jana's index and middle fingers were trembling.

Two months later, on Halloween night 2002, as Jana, dressed as a clown and waiting for her father to come home from work to go trick-or-treating, the phone rang. It was pediatric neurologist Martha Lusser at Lehigh Valley Hospital in Salisbury Township.

Tests for brain tumors and other diseases were negative, Lusser told Judy. Her diagnosis was juvenile Parkinson's, which is quite rare and affects less than 1 percent of all Parkinson's patients. Over the next eight months, neurologists in Philadelphia and New York would confirm Lusser's diagnosis.

''Words could not explain the emotions I felt when the doctors told us,'' Jana typed in her memoir. ''My family was devastated.''

Judy Seagreaves, the family's anchor, drew on the strength she developed growing up as one of eight children in a small coal town in Cambria County. She found renewed purpose in advocating for her daughter's education and medical care.

Ken Seagreaves, a Pennsylvania state trooper three years from retirement, bottled up his sadness. He uncorked his heartache only when he'd sneak glimpses of his daughter and utter something about fairness.

Jana realized, perhaps more than anyone else in her family, that her life as she knew it was ending. The unforgiving realm of high school -- where even the smallest blemish or misstep can ruin a reputation -- loomed before her.

''She would say, 'Meg, I know I won't be able to go to prom and not be able to have boyfriend,' and I'd say, 'Jana, shut up; you don't know that,'' said Jana's neighbor and friend, Meghan Keiper, 22.

Despite her condition, Jana entered Freedom High School near the top of her class in 2003. Her brother, then a senior, was at her side.

Ken Jr. drove Jana to school, carried her books, consulted with her teachers and helped her pass gym.

''I just picture him every single day sitting on a wrestling mat, and he'd throw her a ball,'' said physical education teacher Jennifer Chilmonik.

By Jana's sophomore year, Ken was at New York University, studying history and anthropology. That year, she got a ''B'' in her honors history class and a glimpse of her future. It was the first grade she ever got below an A, and it crushed her. First the disease stripped her of a social life, then it stole her softball glove, then it swiped the sequined black and red Irish step-dancing dresses she had worn since fifth grade. Now it was hijacking the one thing that always had mattered most: her grades.

''You watch a young lady, a young person, who had it all, and then you watch it all slowly being taken away from her,'' said Freedom Principal Roger Washburn. ''It's sad.''

Midway through her sophomore year, her despair took two brief detours. The first came when the Make-A-Wish Foundation sent the Seagreaves family to Japan at the end of 2004. Jana wanted to see where her paternal grandmother was born. The second occurred in May 2005, when actor and Parkinson's patient Michael J. Fox called to tell her to hang tough.

Jana tried. But she couldn't escape reality for long. By this time, it was taking her an hour to type a page and five hours to do her homework. She couldn't plant her foot so she was walking, almost running, on her tiptoes.

One night, Jana turned to her mom and said, ''Promise I'll graduate from high school.''

Of course, her mom said.

Judy and Ken had no idea how hard that vow would be to keep. Jana, the family would soon discover, did not have juvenile Parkinson's. She had something much worse.

By the summer before her junior year, Jana's frequent falls required her to have a constant companion. Her speech had become so garbled only her family understood her. Sensing her daughter's unease about going back to Freedom, Judy asked Matt Quinn, Jana's softball coach, if he would be Jana's aide. A fraternal bond formed.

Quinn could sense when Jana needed to cry after overhearing prom talk. He was there to calm her when she was dropped from the honors program. He helped her get past a complex she had about using a wheelchair at school.

Last July, doctors realized Jana's symptoms were advancing too rapidly and the sleeping medicines were not working the way they should. Months of testing showed only that Jana does not have any of the more than 1,000 degenerative brain disorders known to science.

''The frustration of all the doctors dealing with her is this is some disease that is robbing her entire brain of the ability to function, and we cannot come up with a diagnosis or treatment,'' Lusser said. Last summer, Jana's biggest fears started coming true.

She got a feeding tube to help push her 72-pound weight to 92. She developed seizures. She lost her speech. To top it off, she had to abandon her antique sleigh bed for a depressing metal hospital bunk that is easier for the round-the-clock nurses to help her get in and out of.

Through quivering jaws, Jana can spit out occasional words like ''nasty'' or ''I'm trying.'' Mostly she communicates by rolling her eyes, forcing a thumb up or squeezing someone's hand to let them know she understands.

Because of her limited speech, the school district lent her the Dyonov, an expensive laptop-sized device that allows her to push a button to say ''Yes,'' ''No'' or ''I'm thirsty'' as part of her speech therapy.

The machine cannot say Daddy or Mommy.

When the silence becomes too great, Ken Seagreaves turns on the first-day-of-school tapes just to hear Jana's voice. Judy sits at the foot of her daughter's bed waiting for the rare and occasional moments when a sleeping Jana, her frazzled brain resting, talks clearly.

''Not being able to communicate is the hardest part,'' Judy says.

Despite her rapid decline, Jana's parents, doctors, nurses and educators know determination still burns inside her frozen body. So at 7:45 a.m., Ken Seagreaves swings his Camry into Freedom's rear parking lot and he and the private nurse, Fran Walbert, help Jana out of the car and into the wheelchair Jana keeps at school.

''Look how pretty you are,'' says teaching aide Leslie Keime, 23.

Ken places his daughter's bags on the wheelchair, caresses her cheek and whispers ''Have a good day.''

Keime and Walbert turn Jana into the empty hallway toward their first stop -- Room 103, the school nurse -- before heading to Jana's photojournalism class.

It is here that Jana proves, as she did when she opened the car door, that she is not a complete prisoner of her body.

''Ben,'' she moans, knowing that 17-year-old Ben Rivera is somewhere in class even if she can't turn her head to find him.

Ben is a poet who melted Jana's heart when he captured her struggles in his spoken-word poem ''Caught On Mute.''

On cue, Rivera leaves his seat, stands by Jana's wheelchair and starts reciting, slowly at first, then rhythmically. ''I feel as if I am trapped behind a glass,'' he recites as the rest of the class bury their heads in their work. Jana, he said, inspires him.

On Friday, six weeks since that classroom recital, Jana sits in her wheelchair in Freedom's gymnasium. It's the senior class' first practice for Tuesday night's graduation at Lehigh University's Stabler Arena. Jana is flanked by Keime and Walbert in a sea of 437 text-messaging, chatty, bored-looking seniors lounging in metal fold-up chairs.

The seniors form procession lines and file out the door. Jana stays in her wheelchair in row 15 and starts rocking violently. Keime tries to calm her with arm massages.

''Jan, what's wrong?'' Walbert asks. ''You're here for graduation practice.''

With that, Jana snaps out of it. She raises her head, looks into the nurse's eyes and grasps her outstretched hand. The students march out of the gym, leaving it empty but for Jana, her aide and her nurse. And a 2-year promise of love and dedication days from being sealed.

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