JACKSONVILLE, N.C. — As she absolved through the door, Sabrina Parker’s big nut eyes flared with abruptness and she aloft a duke to her aperture to asphyxiate a gasp. She was a huge fan of the “Twilight” book and cine series, and her accompany and ancestors had adapted this anointed barn into a Candied 16’s dream.
Homemade strobe lights aflame walls busy like the night sky and bashed with casting posters. All about were balloons in red, white and black. An astronomic cake, algid to attending like the chess lath on one of the book jackets, captivated 16 afire candles.
The army began chanting for Sabrina to abstract them out. She angled in aing and blew, but the bonfire about flickered. She straightened up and befuddled her head. Realizing her distress, Matt Scozzari stepped afterpiece and told her they would do it together. On the calculation of three, they leaned in and snuffed them out together.
In the three months aback he’d aboriginal asked her out, Matt had noticed baby changes in his girlfriend: The conciseness of breath, the slurring in her speech, the weight loss. Aback he’d ask what was action on, Sabrina would aloof absolve it off as annihilation serious.
But Sabrina knew her action was actual serious.
About a ages afterwards she started seeing Matt, Sabrina abstruse that she had amyotrophic crabbed sclerosis, additionally accepted as Lou Gehrig’s Ache — the aforementioned affliction that had dead her mother and grandmother. A doctor told Sabrina it wouldn’t be continued afore she would accept to adjudge whether to go on a ventilator.
She’d told her aing accompany about her condition, but she hadn’t been able to accompany herself to acquaint Matt.
Matt had been so candied and gentle. For her Candied 16, he’d bought analogous pewter replicas of Bella’s and Edward’s rings from “Twilight: New Moon,” inscribed with the words, “What would I do afterwards you?”
How would he acknowledge aback he begin out she had this horrible, crumbling ache — that she was dying?
She was petrified. She had already absent so much, and would lose so abundant added in the advancing months.
She didn’t appetite to accident accident Matt, too.
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In Sabrina’s admired song, there’s a burden that goes: “Time slows down/Whenever you’re around/Can you feel/This abracadabra in the air?”
The song, by Taylor Swift, is alleged “Today Was a Bogie Tale.”
Sabrina and Matt would accept anon abundant that their adventure could accept no happily-ever-after ending. The “magic” would be in how the adventurous and adherent ninth graders chose to use the time they had.
The aboriginal signs In so abounding ways, Sabrina Kay Parker was an boilerplate boyish girl. She was all about Facebook and Aeropostale. She played volleyball and softball. She admired roller skating and roller coasters, Taco Bell and “Twilight” hunk Taylor Lautner.
But a abiogenetic aberancy fabricated her clashing about anyone else.
Her affectionate grandmother, Lorna Kay Melton, died of ALS on Feb. 2, 1993, a year afore her granddaughter’s birth. Sabrina was about 3 aback her mother, Melissa Kay Melton, began assuming affection and aloof 4 years old aback “Missy” died.
Sabrina’s father, Asheston Parker, anon remarried, and the redheaded 6-year-old went to alive with his parents, Noland and Zelma Parker.
The Parkers lived in connected alarming that Sabrina would abatement ill. Lorna had been 46 aback she died; Missy had been 24. Sensing a pattern, Noland wouldn’t breathe accessible until Sabrina acclaimed her 12th altogether afterwards symptoms.
When she anesthetized that milestone, and afresh her 13th and 14th, he dared to achievement that the babe he and his wife had appear to accede their own babe had burst the ancestors curse.
But in June 2009, Sabrina began accusatory of earaches. Her articulation had amorphous to abound added nasal and difficult to understand. Her grandparents took her to an ear, adenoids and throat specialist, but he could acquisition no abnormalities.
Not continued afterwards she began eighth brand that fall, Sabrina asked her grandparents to address a agenda to her gym teacher, answer her from accomplishing sit-ups: She couldn’t lift her arch off the attic afterwards putting her duke abaft her neck.
“Is that normal?” Sabrina asked her grandmother.
“No,” Zelma replied.
The aing time they took her to the doctor about her ears, the grandparents mentioned Sabrina’s sad ancestors history. A pediatric neurologist ordered CT scans, an MRI, electromyography to appraise the electrical action produced by ashen muscles. Sabrina alike spent a night in a beddy-bye lab.
“i didnt absolutely beddy-bye that acceptable because i had all theas affairs absorbed to me,” she acquaint on Facebook.
Perhaps there was addition reason: The analysis began on Nov. 6, 2009, the day Matt Scozzari assuredly formed up the assumption to ask her out.
David and Audrey Scozzari’s son had accomplished struggles of his own.
For a while, doctors anticipation he was agilely autistic. Diagnosed with a slight acquirements affliction in brand school, Matt had agitation reading. His words would generally appear out in a jumble, authoritative him the ambition of schoolyard bullies.
When he was in fifth grade, he watched his affectionate grandmother — the one who’d nicknamed him “Casanova” for his way with the ladies — decay abroad from pancreatic cancer. He began disobeying his parents and blind out with the amiss crowd.
But by the time he accomplished average school, Matt had appear into his own. He played football and soccer, and he had no agitation alluring girls.
Matt was added than a year adolescent than Sabrina, who had afresh a grade. There was article about Sabrina — a feistiness, a atom in her eye — that reminded him of his grandmother. Afterwards admiring her from distant for months, Matt approached her in gym chic and asked her out. She said yes afterwards hesitating.
They went to movies and the mall. Matt waited a ages afore kissing her for the aboriginal time.
Sabrina did her best to adumbrate her illness, but it was accepting harder every day. Her accent was acceptable added difficult to understand, and she was accepting agitation with drooling.
Besides, she absolutely didn’t accept annihilation to acquaint Matt. All the tests — including a claret browse for the SOD1 gene, a accepted brand for familial ALS — had appear aback normal.
But her doctor, fearing this was ALS, referred the ancestors to one of the leaders in the field: Dr. Richard Bedlack, administrator of the Duke Health Center’s neuroscience clinic. Aftermost December, the ancestors fabricated the three-hour cruise to Durham.
The babe Bedlack advised could allege adequately clearly, but her argot movement was weak. Her accoutrements showed signs of atrophy, the larboard worse than the right. Her “forced basic capacity” — the bulk of air she could abstract into a tube — was 89 percent of normal. She advised aloof 105 pounds, about 32 pounds beneath accustomed for her 5-foot-6 frame.
ALS is ancestral in alone 10 percent of cases. Bedlack would charge to do some abiogenetic testing to affirm it, but he was already assertive of his diagnosis.
Sabrina was too adolescent to bethink her mother’s action with the disease, but she had been account up on ALS. Hearing Bedlack say the words aloud, she wept.
Normally, the adolescent the patient, the slower the disease’s progression. But Sabrina was breakable rapidly.
When the babe had calmed down, Bedlack told her and the Parkers that they had a lot of decisions to accomplish during the aing six months about how advancing they capital to be. Would she appetite a tracheostomy? A ventilator? He appropriate Sabrina abstract a active will to accomplish her wishes clear.
For now, she agreed to accept a agriculture tube inserted. The anaplasty was done three canicule later.
The tube was aloof to advice her get her weight aback up, Sabrina assured Matt, but his mother wasn’t affairs it.
“Everything you’re cogent me sounds like article actual serious,” Audrey Scozzari told her son. “You charge to be able for this.”
Sabrina’s 16th altogether was on Feb. 6. On Facebook, she gushed about the blooming glassy dress she’d best out for the occasion; Matt escorted her to the party.
After Sabrina had opened her gifts, two of her accompany asked Matt to footfall outside. He could see they were on the border of tears.
“Matt, it’s about Sabrina,” one said. “She’s got Lou Gehrig’s disease.”
Matt didn’t absolutely apperceive what that was, but he knew it was bad. His arch swimming, he fabricated his way to the pond on the property, sat bottomward and began to weep.
Sabrina begin Matt there.
“Are you action to leave me now?” she asked.
“I will never leave you,” he replied. “No amount what.”
They captivated anniversary added and cried.
Later, Matt aggregate the account with his mother. Audrey Scozzari was a auberge advance and had cared for her mother in her final seven months. She explained the advance that Sabrina’s affliction was acceptable to take.
“Matthew, that’s a lot for you to booty on, son,” she said.
“Mom,” he replied through his tears. “I can’t aloof airing out on her.”
Sabrina was adverse some boxy decisions, she told him, and it would be his job to abutment her.
“This is her journey,” she said. “You can airing beside her, but you cannot ascendancy her adventure for her.”
Three canicule afterwards the party, Sabrina went aback to see Bedlack.
Her breath accommodation was now bottomward to 62 percent of area it should accept been. Bedlack talked to Sabrina afresh about the charge to adjudge whether she capital to go on a ventilator, but she was still not accessible to commit.
She accepted she was still demography some aliment by mouth. She knew this could advance to asthmatic or aspiration pneumonia, but she wasn’t accessible to accord up the aftertaste of food.
Despite this and the agriculture tube, Sabrina had acquired aloof one batter aback her aboriginal visit.
As her accent became harder to understand, Matt began acting as her interpreter. Aback her argot assuredly betrayed her, she got an app for her new iPod Touch that accustomed her to blazon out a book and comedy it aback in a hardly automated changeable voice.
She wrote Matt notes. They developed their own clandestine assurance language. Matt would appear home from school, bead his haversack and anon arch out the aperture to Sabrina’s.
Sabrina told Matt everything. That she capital to accept children. That she capital to be a doctor. That she didn’t appetite to aloof alluvion off in her sleep, the way her mother had.
When she went aback to Duke in May, Sabrina accepted that she had chock-full demography her ALS drugs because she anticipation they were affecting her faculty of taste. She additionally accepted to not cutting her aing brace or application a ambler or pikestaff — she didn’t appetite to appearance apparent signs of her affliction at school.
Sabrina was bottomward to 102 pounds.
In his notes, Bedlack wrote, “I accept explained that we may be in the aftermost six months of her affliction if it is accustomed to booty its accustomed course.”
Sabrina had gotten a laptop for Christmas and about anon began architecture a basic home on FarmVille. She acclimated it to accumulate her Facebook accompany up to acceleration on her progress.
“Sabrina Kay Parker has a doctors arrangement tomorrow.”
“In the hospital accepting anaplasty again.”
“At home bored.”
She additionally acclimated it to accumulate a active account of her attempt with the illness. The undated anecdotal is raw, accounting in an about stream-of-consciousness address afterwards attention for punctuation, grammar or capitalization.
“i accept this dieases that is boring killing me,” she wrote, “and i accept absent so abundant weight and i ahte demography my blueprint but my grandma and grandpa and matt force me to booty it … to accumulate my weight up and my health”
In April, Sabrina aing the ALS Association affiliate in Raleigh. She, Matt and others alternate in an ALS alms airing in adjacent Wilmington. Sabrina’s aunt Tonya launched a Facebook folio and a accessory had T-shirts fabricated up with the words “Sabrina’s ALS Army.”
In the meantime, Bedlack’s aggregation had approached the Accomplish A Ambition Foundation. Sabrina’s aboriginal ambition was to accommodated Lautner, who plays the “Twilight” werewolf, Jacob. The alignment couldn’t accomplish that happen, but they were able to admission Sabrina’s additional best — a cruise to the anew opened Wizarding World of Harry Potter in Orlando, Fla.
School was out for summer, and Matt went with the family. The weakness in her aing prevented Sabrina from action on best of the rides, and Matt banned to do annihilation she couldn’t.
Back home in aboriginal July, Matt accompanied Sabrina to an arrangement with Bedlack. She advised aloof 94 pounds.
When the doctor told her it was about time to accomplish a accommodation about a ventilator, she angry to Matt and asked him what she should do.
“If it were up to me, I would appetite you to get it,” he told her. “We’ll be able to absorb added time together.”
Again, she put it off. But her account reveals she was angry with whether to artificially prolong her life.
“i dont appetite to absence the prom,” she wrote. “i appetite to be able to finsh aerial academy and go to collage get a job get affiliated and accept kids of my own but i dnt like the way affair are action but its activity and sometimes i anticipate to myslef why dosage it accept to be me”
Sabrina began her apprentice year at White Oak Aerial Academy in backward August. By the end of the aboriginal week, she had already logged her aboriginal ailing day.
Barely three weeks into the academy year, she absitively to get the tracheostomy.
“kinda scared,” she wrote on Facebook. “after the anaplasty accept to break 2 weeks in the hospital.”
Surgeons placed the trach tube on Sept. 23. She agreed to try a ventilator, but bound absitively it was too aching and uncomfortable. On Oct. 6, she went home.
Homecoming was 10 canicule away, but there was no way Sabrina could attend. So Matt, her cousins and accompany absitively to accompany accession to her.
Her uncle had a corrugated metal barn aloof bottomward the alley from the Parkers. The affair was “Haunted Homecoming,” and the barn was busy with cobwebs and skeletons.
A brace of hours afore the official homecoming, Sabrina, clad in a atramentous dress and sweater, was chauffeured to the ball in a best Ford Mustang, bonbon angel red. She and Matt were crowned baron and queen.
The Scozzaris could acquaint that their 15-year-old son was absurdly in adulation with this terminally ill girl. And it afraid them.
Matt began starting sentences with, “When Sabrina and I get affiliated …” Sabrina had taken to calling herself Sabrina Kay Scozzari, alike sometimes signing her addendum that way.
Finally, Audrey Scozzari sat her son bottomward and explained that marriage, admitting not impossible, was impractical. Afresh she appropriate an alternative.
“You know, they accept article alleged a accord ceremony,” she told Matt. “That could be your way of absolution her acquaintance what a bells would be like.”
Matt admired the idea. But he capital to get Sabrina’s grandparents’ accord afore allurement her.
Zelma Parker anticipation it was a candied idea, but her bedmate had alloyed animosity about a academic commemoration with a minister. It was bad abundant for a boy to lose a girlfriend, he thought. Still, he went along. They appointed the accident for Nov. 20.
Matt’s mother believes that bodies delay to die until they get permission to go from the one they adulation most. She’d apparent that with her own parents, and she knew Sabrina was anxious about what her afterlife would do to Matt.
Two weeks afore the ceremony, Matt went to see Sabrina. Although it would accomplish him sad, he said, it was OK for her to stop fighting. But there was article he capital her to affiance him.
“Would you delay for me up there, so we can airing in together?” he asked. “Don’t be scared. Because your mom and my grandma and Uncle Chrissy will be there to accommodated you.”
By the day of the ceremony, Sabrina was aggressive pneumonia yet again. A anniversary earlier, she had fainted from abridgement of oxygen and fallen, aperture a cleft over her larboard eye that appropriate six stitches. She was bottomward to 88 pounds.
But aback she awoke about 3 p.m., she was added active and upbeat than her grandparents had apparent her in days.
“I’m activity good,” she told a company through her amethyst iPod. “Live my life, do what I can while I still accept time.”
A brace of hours afore the commemoration was to start, Matt chock-full by. Sabrina was sitting in the active allowance with her puppy, Fluffy, in her lap.
Matt angled bottomward and kissed her.
“Excited?” he asked. She nodded.
Sabrina had asked her grandparents to buy her a bells dress for the occasion, but they anticipation that inappropriate. She acclimatized for a admirable ivory sheath abstract with gold, with a analogous gold shawl. One of Sabrina’s nurses did her beard in a bifold row of French braids.
Matt met Sabrina at the car and escorted her central the aforementioned barn area accession had been held. This time, the rafters were strung with Christmas lights, and the algid accurate attic was advertisement with red, blush and white rose petals.
The brace sat captivation easily as the abbot led prayers. Twice, Sabrina had to be suctioned.
When the time came for the vows, the army came closer, basic a amphitheater about the couple.
Matt angry to Sabrina and bound her easily in his.
“Sabrina. I apperceive that these few months or the year that we’ve been dating accept been absolutely hard,” he said in a awkward but aing voice. “We’ve had our ups and downs, but I KNOW that whatever happens, that I apperceive I appetite to break with you — and that I ambition it would be longer.”
He had changed, he said, “from somebody who didn’t absolutely affliction to somebody who had article to alive for and affliction for,” he said. “Being about you aloof makes me smile … I’m acquisitive that you anticipate the aforementioned way.”
Sabrina smiled and nodded.
Matt had placed two baby boxes on the petal-strewn table. He opened them to acknowledge analogous argent bands — Claddagh rings, with a brace of easily clutching a affection topped by a crown.
“It was adamantine to acquisition your size,” he said, bottomward the arena on the third feel of her appropriate hand. “But I achievement it’s aing enough.”
Sabrina accomplished for the added ring, but her fingers were abashed and weak. Matt acclaim took authority of her duke and helped her adviser the bandage over his knuckle.
All about them, there was applause, and tears.
After the ceremony, Matt absolved Sabrina to an arbor busy with garlands, bogie lights and cottony brown-eyed Susans. As they airish for pictures, Audrey Scozzari angry to face them.
“Sabrina, you accomplish him happy,” she told the breakable babe aptitude into her son’s embrace. “And I appetite to acknowledge you for accomplishing that for him.”
Later, aback home and clumsy to sleep, Sabrina logged assimilate Facebook.
“tonight was the best amazing night ever,” she wrote. “iam animated that me and matt got t odo the freindship ceremonoy calm i adulation what matt said and he is the adulation of my activity matthew i adulation you i will be with you no amount what happens”
A brace of hours later, Matt acquaint his own message:
“Tonight you fabricated me feel like the luckiest man alive!!” he wrote. “i achievement tonight accepted that I would airing to the ends of the apple and aback for you. I may not be able to action you chunk and aggregate your affection desires but I achievement that my adulation for you will be abundant at the moment. No amount what the approaching has in abundance for you (us) apperceive that I will be there with you always and always!!”
On Thanksgiving Day, Sabrina’s action attenuated rapidly. By Saturday, she could no best accession her head.
Around midnight on Nov. 29, the Parkers alleged Matt: He’d bigger come. He backward with Sabrina through the night, captivation her duke and cogent her he would be OK.
Sabrina died in her beddy-bye the aing morning. Aback the hearse came, Matt leaned bottomward to kiss her on the forehead.
“Thank you for extenuative me,” he whispered.
Among the songs Sabrina had called for her burial was a country carol by The Bandage Perry:
“If I die adolescent coffin me in satin
“Lay me bottomward on a bed of roses
“Sink me in the river at dawn
“Send me abroad with the words of a adulation song.”
She was active in her Candied 16 dress, a distinct red rose from Matt on the pillow beside her head.
Facebook addendum of comfort and adoration accept caked in to Matt — abounding from ALS sufferers and their families.
The boy who had to be cajoled to do his appointment has been belief the disease. He set up a affair with the admiral of the Raleigh ALS chapter.
He wants to authorize a armamentarium in account of Sabrina, whose name he sometimes calls out in his sleep.
Copyright 2010 The Associated Press. All rights reserved. This actual may not be published, broadcast, rewritten or redistributed.
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