A final act so others could live
Rare brain disease stole woman’s life, but not her capacity to care
ALLENTOWN, Pa. — They just wanted her suffering to end. So they painted her nails. It didn’t work. “Let’s change her earrings,” her father suggested softly and kindly. They did; it didn’t work either. “Let’s get Noel,” her friend suggested.
So the family, with the permission of doctors and nurses at Lehigh Valley Hospital, brought her pet dachshund to the intensive care unit. Just like at home in Bethlehem Township, Noel jumped into her bed and curled up at the ankles she could not feel.
But the tokens of affection from friends and family — and the drips of morphine provided by doctors — brought only so much comfort. And through it all Jana Seagreaves’ heart refused to stop.
“I’ve never seen anything like this, and I’ve been practicing here 41 years,” Dr. Joseph E. Vincent said. “I’ve seen cases of withdrawing and withholding and treating people as they are dying. That’s not uncommon.”
“What’s so different about this,” Vincent continued, searching for the right word, “I can’t give any other word, but love, loving family relationship. Just spectacular love.”
Maybe it was the love that kept Jana’s 23- year- old heart going. Maybe it was the laughter of family and friends she could not see who gathered in her sterile, glass- enclosed room to reminisce about vacations, a Make- a- Wish trip to Japan and sledding down a deserted street.
Or maybe it was just Jana being the ornery, determined fighter she’d always been, not wanting to die until she picked the time.
That time was 12: 41 a. m. Feb. 10.
But Jana’s journey was just beginning, as her death set in motion a five- year- old plan that would allow her parents to keep a promise that her suffering would not be in vain.
“Her journey was pretty rough, and she didn’t want anyone to feel like her,” said Jana’s sister, Megan Connell, 30.
The brain disease that left her immobile has no medical name and had never been seen before, according to some of the top U. S. neurologists who treated Jana. The symptoms — mainly loss of muscle control — closely resemble those of juvenile Parkinson’s disease, so that’s what her family called it for 11 years.
“But Jana never had a pity party,” Megan said. She had a life instead. Jana Elizabeth was born Jan. 12, 1989, to Judy, who gave up her nursing career to raise a family, and Ken, a Pennsylvania state trooper. As Jana grew into a little girl with green eyes and angelic skin, her wit became as fast as her legs, her intellect as precise as her Irish step dancing.
But by the time she turned 11, Jana knew something was wrong. It was the constant cramping in her right hand whenever she wrote a poem or story. For a while, she didn’t tell her parents about the aches, but she couldn’t hide the trembling fingers.
As symptoms progressed, Jana made her parents promise three things: She would graduate from high school on time. She would never go into a nursing home. She would bequeath her brain and spinal cord to science so others could learn, and she would donate her organs so others could live.
On June 5, 2007, the first promise was fulfilled when Jana received her diploma.
For about the next five years, Jana would be home, cared for by her mother, a platoon of nurses and a father who took early retirement to work three other jobs to pay the medical bills.
When the Seagreaves’ second child, Kenny Jr., returned from teaching English in Japan, he helped care for his baby sister, who had only one daily joy left in life: Turkey Hill Dutch chocolate ice cream.
Then, when it snowed Jan. 21, Kenny had an idea: sledding.
He and his sister slid down a deserted street, a video camera catching the blanket of snow Jana’s unblinking eyes could not see.
Twelve days after that toboggan run, Jana asphyxiated and was rushed to the hospital. She was put on a ventilator. When doctors said Jana would lose the ability to taste her favourite ice cream, the family gathered at her bedside and decided that was no life.
They gave the order Feb. 4 to shut off the ventilator. Doctors administered morphine and antianxiety drips to ease the sensation of suffocation.
Jana held on despite receiving 10 times the normal dose of morphine, despite the comforts her family brought, despite their pleas to let go and be at peace.
“We got to hug her, smell her, tell her we love her,” her father said. For six days. When Jana died, the disease melted from her face.
Then Kenny Jr. placed a call, and a hearse picked up Jana for a long- planned trip to Columbia Medical Center in New York City so a final promise could be kept.
She was buried Valentine’s Day, two days after her heart valves saved a life.
“She looked beautiful,” Judy said.
She looked like Jana.