Facing,and fighting, a deadly disease

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In this Saturday, Nov. 20, 2010 photo, Sabrina Parker's grandfather, Noland Parker, cleans her trachea tube at his home in Jacksonville, N.C. Sabrina passed away on Nov. 30, 2010 from ALS, also known as Lou Gehrig's Disease, which also killed her mother and grandmother. (AP Photo/Gerry Broome)

s she walked through the door, Sabrina Parker’s big hazel eyes flared with surprise and she raised a hand to her mouth to stifle a gasp. She was a huge fan of the “Twilight” book and movie series, and her friends and family had transformed this greasy garage into a Sweet 16’s dream.

Homemade strobe lights illuminated walls decorated like the night sky and plastered with cast posters. All around were balloons in red, white and black. An enormous cake, iced to look like the chess board on one of the book jackets, held 16 blazing candles.

The crowd began chanting for Sabrina to blow them out. She bent in close and blew, but the flames barely flickered. She straightened up and shook her head. Realizing her distress, Matt Scozzari stepped closer and told her they would do it together. On the count of three, they leaned in and snuffed them out together.

In the three months since he’d first asked her out, Matt had noticed small changes in his girlfriend: The shortness of breath, the slurring in her speech, the weight loss. When he’d ask what was going on, Sabrina would just shrug it off as nothing serious.

But Sabrina knew her condition was very serious.

About a month after she started seeing Matt, Sabrina learned that she had amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease — the same illness that had killed her mother and grandmother. A doctor told Sabrina it wouldn’t be long before she would have to decide whether to go on a ventilator.

She’d told her closest friends about her condition, but she hadn’t been able to bring herself to tell Matt.

Matt had been so sweet and gentle. For her Sweet 16, he’d bought matching pewter replicas of Bella’s and Edward’s rings from “Twilight: New Moon,” inscribed with the words, “What would I do without you?”

How would he react when he found out she had this horrible, wasting disease — that she was dying?

She was petrified. She had already lost so much, and would lose so much more in the coming months.

She didn’t want to risk losing Matt, too.

In Sabrina’s favorite song, there’s a refrain that goes: “Time slows down/Whenever you’re around/Can you feel/This magic in the air?”

The song, by Taylor Swift, is called “Today Was a Fairy Tale.”

Sabrina and Matt would understand soon enough that their story could have no happily-ever-after ending. The “magic” would be in how the brave and devoted ninth graders chose to use the time they had.

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In so many ways, Sabrina Kay Parker was an average teenage girl. She was all about Facebook and Aeropostale. She played volleyball and softball. She loved roller skating and roller coasters, Taco Bell and “Twilight” hunk Taylor Lautner.

But a genetic abnormality made her unlike almost anyone else.

Her maternal grandmother, Lorna Kay Melton, died of ALS on Feb. 2, 1993, a year before her granddaughter’s birth. Sabrina was around 3 when her mother, Melissa Kay Melton, began showing symptoms and just 4 years old when “Missy” died.

Sabrina’s father, Asheston Parker, soon remarried, and the redheaded 6-year-old went to live with his parents, Noland and Zelma Parker.

The Parkers lived in constant dread that Sabrina would fall ill. Lorna had been 46 when she died; Missy had been 24. Sensing a pattern, Noland wouldn’t breathe easy until Sabrina celebrated her 12th birthday without symptoms.

When she passed that milestone, and then her 13th and 14th, he dared to hope that the girl he and his wife had come to consider their own daughter had broken the family curse.

But in June 2009, Sabrina began complaining of earaches. Her voice had begun to grow more nasal and difficult to understand. Her grandparents took her to an ear, nose and throat specialist, but he could find no abnormalities.

Not long after she began eighth grade that fall, Sabrina asked her grandparents to write a note to her gym teacher, excusing her from doing sit-ups: She couldn’t lift her head off the floor without putting her hand behind her neck.

“Is that normal?” Sabrina asked her grandmother.

“No,” Zelma replied.

The next time they took her to the doctor about her ears, the grandparents mentioned Sabrina’s sad family history. A pediatric neurologist ordered CT scans, an MRI, electromyography to evaluate the electrical activity produced by skeletal muscles. Sabrina even spent a night in a sleep lab.

“i didnt really sleep that good because i had all theas wires attached to me,” she posted on Facebook.

Perhaps there was another reason: The test began on Nov. 6, 2009, the day Matt Scozzari finally worked up the nerve to ask her out.

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David and Audrey Scozzari’s son had experienced struggles of his own.

For a while, doctors thought he was mildly autistic. Diagnosed with a slight learning disability in grade school, Matt had trouble reading. His words would often come out in a jumble, making him the target of schoolyard bullies.

When he was in fifth grade, he watched his maternal grandmother — the one who’d nicknamed him “Casanova” for his way with the ladies — waste away from pancreatic cancer. He began disobeying his parents and hanging out with the wrong crowd.

But by the time he reached middle school, Matt had come into his own. He played football and soccer, and he had no trouble attracting girls.

Matt was more than a year younger than Sabrina, who had repeated a grade. There was something about Sabrina — a feistiness, a spark in her eye — that reminded him of his grandmother. After admiring her from afar for months, Matt approached her in gym class and asked her out. She said yes without hesitating.

They went to movies and the mall. Matt waited a month before kissing her for the first time.

Sabrina did her best to hide her illness, but it was getting harder every day. Her speech was becoming more difficult to understand, and she was having trouble with drooling.

Besides, she really didn’t have anything to tell Matt. All the tests — including a blood scan for the SOD1 gene, a common marker for familial ALS — had come back normal.

But her doctor, fearing this was ALS, referred the family to one of the leaders in the field: Dr. Richard Bedlack, director of the Duke Health Center’s neuroscience clinic. Last December, the family made the three-hour trip to Durham.

The girl Bedlack examined could speak fairly clearly, but her tongue movement was weak. Her arms showed signs of atrophy, the left worse than the right. Her “forced vital capacity” — the amount of air she could blow into a tube — was 89 percent of normal. She weighed just 105 pounds, about 32 pounds below normal for her 5-foot-6 frame.

ALS is hereditary in only 10 percent of cases. Bedlack would need to do some genetic testing to confirm it, but he was already certain of his diagnosis.

Sabrina was too young to remember her mother’s battle with the disease, but she had been reading up on ALS. Hearing Bedlack say the words aloud, she wept.

Normally, the younger the patient, the slower the disease’s progression. But Sabrina was deteriorating rapidly.

When the girl had calmed down, Bedlack told her and the Parkers that they had a lot of decisions to make during the next six months about how aggressive they wanted to be. Would she want a tracheostomy? A ventilator? He suggested Sabrina draft a living will to make her wishes clear.

For now, she agreed to have a feeding tube inserted. The surgery was done three days later.

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The tube was just to help her get her weight back up, Sabrina assured Matt, but his mother wasn’t buying it.

“Everything you’re telling me sounds like something very serious,” Audrey Scozzari told her son. “You need to be prepared for this.”

Sabrina’s 16th birthday was on Feb. 6. On Facebook, she gushed about the green satin dress she’d picked out for the occasion; Matt escorted her to the party.

After Sabrina had opened her gifts, two of her friends asked Matt to step outside. He could see they were on the verge of tears.

“Matt, it’s about Sabrina,” one said. “She’s got Lou Gehrig’s disease.”

Matt didn’t exactly know what that was, but he knew it was bad. His head swimming, he made his way to the pond on the property, sat down and began to weep.

Sabrina found Matt there.

“Are you going to leave me now?” she asked.

“I will never leave you,” he replied. “No matter what.”

They held each other and cried.

Later, Matt shared the news with his mother. Audrey Scozzari was a hospice volunteer and had cared for her mother in her final seven months. She explained the course that Sabrina’s illness was likely to take.

“Matthew, that’s a lot for you to take on, son,” she said.

“Mom,” he replied through his tears. “I can’t just walk out on her.”

Sabrina was facing some tough decisions, she told him, and it would be his job to support her.

“This is her journey,” she said. “You can walk beside her, but you cannot control her journey for her.”

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Three days after the party, Sabrina went back to see Bedlack.

Her breathing capacity was now down to 62 percent of where it should have been. Bedlack talked to Sabrina again about the need to decide whether she wanted to go on a ventilator, but she was still not ready to commit.

She admitted she was still taking some nourishment by mouth. She knew this could lead to choking or aspiration pneumonia, but she wasn’t ready to give up the taste of food.

Despite this and the feeding tube, Sabrina had gained just one pound since her first visit.

As her speech became harder to understand, Matt began acting as her interpreter. When her tongue finally betrayed her, she got an app for her new iPod Touch that allowed her to type out a sentence and play it back in a slightly mechanical female voice.

She wrote Matt notes. They developed their own private sign language. Matt would come home from school, drop his backpack and immediately head out the door to Sabrina’s.

Sabrina told Matt everything. That she wanted to have children. That she wanted to be a doctor. That she didn’t want to just drift off in her sleep, the way her mother had.

When she went back to Duke in May, Sabrina admitted that she had stopped taking her ALS drugs because she thought they were affecting her sense of taste. She also confessed to not wearing her neck brace or using a walker or cane — she didn’t want to show outward signs of her illness at school.

Sabrina was down to 102 pounds.

In his notes, Bedlack wrote, “I have explained that we may be in the last six months of her illness if it is allowed to take its natural course.”

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Sabrina had gotten a laptop for Christmas and almost immediately began building a virtual home on FarmVille. She used it to keep her Facebook friends up to speed on her progress.

“Sabrina Kay Parker has a doctors appointment tomorrow.”

“In the hospital getting surgery again.”

“At home bored.”

She also used it to keep a running journal of her struggle with the illness. The undated narrative is raw, written in an almost stream-of-consciousness manner without regard for punctuation, grammar or capitalization.

“i have this dieases that is slowly killing me,” she wrote, “and i have lost so much weight and i ahte taking my formula but my grandma and grandpa and matt force me to take it … to keep my weight up and my health”

In April, Sabrina joined the ALS Association chapter in Raleigh. She, Matt and others participated in an ALS charity walk in nearby Wilmington. Sabrina’s aunt Tonya launched a Facebook page and a cousin had T-shirts made up with the words “Sabrina’s ALS Army.”

In the meantime, Bedlack’s team had approached the Make A Wish Foundation. Sabrina’s first wish was to meet Lautner, who plays the “Twilight” werewolf, Jacob. The organization couldn’t make that happen, but they were able to grant Sabrina’s second choice — a trip to the newly opened Wizarding World of Harry Potter in Orlando, Fla.

School was out for summer, and Matt went with the family. The weakness in her neck prevented Sabrina from going on most of the rides, and Matt refused to do anything she couldn’t.

Back home in early July, Matt accompanied Sabrina to an appointment with Bedlack. She weighed just 94 pounds.

When the doctor told her it was about time to make a decision about a ventilator, she turned to Matt and asked him what she should do.

“If it were up to me, I would want you to get it,” he told her. “We’ll be able to spend more time together.”

Again, she put it off. But her journal reveals she was wrestling with whether to artificially prolong her life.

“i dont want to miss the prom,” she wrote. “i want to be able to finsh high school and go to collage get a job get married and have kids of my own but i dnt like the way thing are going but its life and sometimes i think to myslef why dose it have to be me”

Sabrina began her freshman year at White Oak High School in late August. By the end of the first week, she had already logged her first sick day.

Barely three weeks into the school year, she decided to get the tracheostomy.

“kinda scared,” she wrote on Facebook. “after the surgery have to stay 2 weeks in the hospital.”

Surgeons placed the trach tube on Sept. 23. She agreed to try a ventilator, but quickly decided it was too painful and uncomfortable. On Oct. 6, she went home.

Homecoming was 10 days away, but there was no way Sabrina could attend. So Matt, her cousins and friends decided to bring homecoming to her.

Her uncle had a corrugated metal garage just down the road from the Parkers. The theme was “Haunted Homecoming,” and the garage was decorated with cobwebs and skeletons.

A couple of hours before the official homecoming, Sabrina, clad in a black dress and sweater, was chauffeured to the dance in a vintage Ford Mustang, candy apple red. She and Matt were crowned king and queen.

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The Scozzaris could tell that their 15-year-old son was madly in love with this terminally ill girl. And it worried them.

Matt began starting sentences with, “When Sabrina and I get married …” Sabrina had taken to calling herself Sabrina Kay Scozzari, even sometimes signing her notes that way.

Finally, Audrey Scozzari sat her son down and explained that marriage, though not impossible, was impractical. Then she suggested an alternative.

“You know, they have something called a friendship ceremony,” she told Matt. “That could be your way of letting her experience what a wedding would be like.”

Matt loved the idea. But he wanted to get Sabrina’s grandparents’ consent before asking her.

Zelma Parker thought it was a sweet idea, but her husband had mixed feelings about a formal ceremony with a minister. It was bad enough for a boy to lose a girlfriend, he thought. Still, he went along. They scheduled the event for Nov. 20.

Matt’s mother believes that people wait to die until they get permission to go from the one they love most. She’d seen that with her own parents, and she knew Sabrina was concerned about what her death would do to Matt.

Two weeks before the ceremony, Matt went to see Sabrina. Although it would make him sad, he said, it was OK for her to stop fighting. But there was something he wanted her to promise him.

“Would you wait for me up there, so we can walk in together?” he asked. “Don’t be scared. Because your mom and my grandma and Uncle Chrissy will be there to meet you.”

By the day of the ceremony, Sabrina was battling pneumonia yet again. A week earlier, she had fainted from lack of oxygen and fallen, opening a gash over her left eye that required six stitches. She was down to 88 pounds.

But when she awoke around 3 p.m., she was more alert and upbeat than her grandparents had seen her in days.

“I’m feeling good,” she told a visitor through her purple iPod. “Live my life, do what I can while I still have time.”

A couple of hours before the ceremony was to start, Matt stopped by. Sabrina was sitting in the living room with her puppy, Fluffy, in her lap.

Matt bent down and kissed her.

“Excited?” he asked. She nodded.

Sabrina had asked her grandparents to buy her a wedding dress for the occasion, but they thought that inappropriate. She settled for a lovely ivory sheath embroidered with gold, with a matching gold shawl. One of Sabrina’s nurses did her hair in a double row of French braids.

Matt met Sabrina at the car and escorted her inside the same garage where homecoming had been held. This time, the rafters were strung with Christmas lights, and the cold concrete floor was strewn with red, pink and white rose petals.

The couple sat holding hands as the minister led prayers. Twice, Sabrina had to be suctioned.

When the time came for the vows, the crowd came closer, forming a circle around the couple.

Matt turned to Sabrina and clasped her hands in his.

“Sabrina. I know that these few months or the year that we’ve been dating have been really hard,” he said in a halting but firm voice. “We’ve had our ups and downs, but I KNOW that whatever happens, that I know I want to stay with you — and that I wish it would be longer.”

He had changed, he said, “from somebody who didn’t really care to somebody who had something to live for and care for,” he said. “Being around you just makes me smile … I’m hoping that you think the same way.”

Sabrina smiled and nodded.

Matt had placed two small boxes on the petal-strewn table. He opened them to reveal matching silver bands — Claddagh rings, with a pair of hands clutching a heart topped by a crown.

“It was hard to find your size,” he said, slipping the ring on the third finger of her right hand. “But I hope it’s close enough.”

Sabrina reached for the other ring, but her fingers were trembling and weak. Matt gently took hold of her hand and helped her guide the band over his knuckle.

All around them, there was applause, and tears.

After the ceremony, Matt walked Sabrina to an arbor decorated with garlands, fairy lights and silk brown-eyed Susans. As they posed for pictures, Audrey Scozzari turned to face them.

“Sabrina, you make him happy,” she told the frail girl leaning into her son’s embrace. “And I want to thank you for doing that for him.”

Later, back home and unable to sleep, Sabrina logged onto Facebook.

“tonight was the most amazing night ever,” she wrote. “iam glad that me and matt got t odo the freindship ceremonoy together i love what matt said and he is the love of my life matthew i love you i will be with you no matter what happens”

A couple of hours later, Matt posted his own message:

“Tonight you made me feel like the luckiest man alive!!” he wrote. “i hope tonight proved that I would walk to the ends of the earth and back for you. I may not be able to offer you diamonds and everything your heart desires but I hope that my love for you will be enough at the moment. No matter what the future has in store for you (us) know that I will be there with you forever and always!!”

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On Thanksgiving Day, Sabrina’s condition deteriorated rapidly. By Saturday, she could no longer raise her head.

Around midnight on Nov. 29, the Parkers called Matt: He’d better come. He stayed with Sabrina through the night, holding her hand and telling her he would be OK.

Sabrina died in her sleep the next morning. When the hearse came, Matt leaned down to kiss her on the forehead.

“Thank you for saving me,” he whispered.

Among the songs Sabrina had chosen for her funeral was a country ballad by The Band Perry:

“If I die young bury me in satin

“Lay me down on a bed of roses

“Sink me in the river at dawn

“Send me away with the words of a love song.”

She was buried in her Sweet 16 dress, a single red rose from Matt on the pillow beside her head.

Facebook notes of condolence and prayer have poured in to Matt — many from ALS sufferers and their families.

The boy who had to be cajoled to do his homework has been studying the disease. He set up a meeting with the president of the Raleigh ALS chapter.

He wants to establish a fund in honor of Sabrina, whose name he sometimes calls out in his sleep.

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Allen G. Breed, a national writer for The Associated Press based in Raleigh, can be reached at features(at)ap.org.

Copyright © 2010 The Associated Press

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