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Jerry Davich: Profiled in 2010, cystic fibrosis claims teen

AlyssMathas 16 center has her dress held by relative Kaitlyn Kutanovski Crown Point left her date Zac Lawt18 as they

Alyssa Mathas, 16, center, has her dress held by relative Kaitlyn Kutanovski of Crown Point, left, and her date Zac Lawton, 18, as they make their way to the limo to take them to the Hobart HIgh School prom Saturday in Hobart. Mathas has been battling debilitating health problems since she was first diagnosed with cystic fibrosis as a baby. | File Photo~Sun-Times Media ORG XMIT: DAV-PROM 5 051510.jpg

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Updated: February 27, 2013 6:07AM



Alyssa Mathas gave me a half-hearted smile when I left her alone with her prom date at Hobart High School in May 2010.

Finally, she must have thought to herself, this newspaper columnist is done asking me endless questions, shadowing my every move and bringing a photographer, too.

A few hours earlier, the then 16-year-old, 80-pound sophomore clutched an oxygen tube in her left hand and tucked it behind her date’s back, out of view from the cameras outside her Hobart home. The ever-present tube tethered her to an oxygen tank inside the house and the ever-present understanding that she is not like most other kids. That’s why that night — prom night — was even more special to her.

There, several card-carrying members of the parent-paparazzi stood in Alyssa’s front lawn, capturing permanent memories on digital technology. Alyssa looked beautiful in her turquoise prom dress with hot-pink sequin beads, even though her mother, Debbie Mathas, joked that it “weighed more than her.”

“She looks like a princess,” one parent told another while watching Alyssa pose.

“But she’s a very sick princess,” one of the neighborhood kids whispered.

Yes, a very sick princess indeed.

Alyssa was diagnosed as a baby with cystic fibrosis, an inherited disease affecting her weak, dying lungs. Through the years, her condition rose with hope and plummeted with peril on a routine basis. By age 16, she badly needed a life-saving lung transplant.

In the fall of 2010, Alyssa was officially listed on the transplant list. Her dream soon came true. A pair of lungs from an anonymous donor became available at the St. Louis Children’s Hospital. Surgery was successful. A fresh breath of life entered her frail body.

“Alyssa took her first breath and cried tears of joy because she forgot how good it felt to breathe,” Debbie said.

“Thank you God!” Debbie posted on her Facebook page. “Thank you everyone for your prayers, (they) worked. Alyssa is doing well. She is now in recovery and getting ready to be moved upstairs. So Thankful!!!!!!!”

Fast forward to May 2011, when Alyssa contacted me with this happy note.

“I am doing great!” she told me. “Knock on wood, no rejection, and I feel amazing. I walked my first 5K last month, now the prom with no (oxygen tank) and I could actually dance! I am truly blessed to say I’m alive and happy!”

Last February, she proudly posted on Facebook a photo of her atop a scale, weighing in at the most she has ever weighed in her young life — 97.6 pounds. Less than 3 pounds from her goal.

That was the last I had heard from Alyssa, or about her new, active life, until last fall when her condition again plummeted.

Although she had started taking classes at Ivy Tech Community College, she had to be admitted into a hospital for a second time but managed to return home just in time for her 19th birthday, on Christmas Eve.

But on Jan. 14, Alyssa was airlifted to the same St. Louis hospital with respiratory distress and possible pneumonia. Earlier this week, she was put into a medically induced coma.

“Her wishes that she expressed to her mother were if something (like this) happens, she did not want to be resuscitated,” explained her aunt, Sherry Mathas-Gillespie, of Lake Station.

Alyssa’s mother posted updates on her Facebook page, stating on Sunday: “Please continue to keep Alyssa in your prayers ... she is in a fight for her life. Keep fighting Alyssa ... you can do it!”

Her last breath

Doctors conducted more tests and, on Tuesday, told the family that nothing more could be done to save Alyssa.

“They couldn’t find what was wrong with her, and she was too sick, weak and frail for doctors to do surgery to look at her lungs,” Gillespie said.

On Wednesday morning, the decision was made to remove her from the ventilator that kept her alive. According to her family, Alyssa “received her wings” shortly afterward.

“I am truly devastated. We all are. She looked so beautiful,” Gillespie added, reiterating what Alyssa’s parents told her. “Alyssa was really, really a very special young lady.”

Within minutes, Debbie and Alyssa’s Facebook pages were flooded with prayers, kind words and remembrances from family, friends, and even strangers.

“Our world lost a special soul today,” wrote Leah B.

“It was an honor to be her nurse and her friend. Breathe easy little one,” wrote Rachel G.

“You raised one hell of a fighter. She was completely amazing and you were a huge reason why she turned out so fantastic,” wrote Kelly B.

Hobart High School Principal Brent Martinson told me that his staff, students and parents had the “honor and privilege” of knowing Alyssa.

“She taught us how to love and respect others and how to never give up no matter what the circumstances were in front of us,” he said. “Alyssa was and still is an important part of the city of Hobart and we will honor Alyssa’s life by doing what she did best — giving 100 percent each and every day, and never giving up on our hopes and dreams. We will miss her very much.”

Alyssa’s aunt Christine Kutanovski, of Crown Point, said Alyssa’s tired, fragile body simply gave up. Her spirit didn’t, however.

“She was a fighter until the end,” she noted.

Kelly Crowe, of Chicago, Alyssa’s long-time friend who also struggles with cystic fibrosis, said her favorite memory is the two of them crossing the finish line together of a 5K walk/run in Valparaiso, just months after Alyssa’s transplant surgery.

“We were no longer sick patients, but triumphant athletes,” Crowe said through tears.

On late Wednesday night, Alyssa’s mother, Debbie, responded to everyone who reached out to her throughout the day. She did so by reaching out to Alyssa.

“Rest in peace my beautiful Angel Alyssa!” she wrote on her Facebook page. “Thank you for sharing your life with me and giving me the great honor of being your mom. Your great strength, love, courage and compassion has forever changed my life and the lives of so many.

“You have given our family so much love and have made us all better people. You will never be forgotten my little angel of strength!”

It was Debbie who not only gave birth to Alyssa, but who was with her throughout every medical crisis, every high, every low and seemingly every breath. This continued as every breath was shorter and shorter, then aided with a ventilator, then gasped without any medical equipment.

“Thanks to you God ... for allowing me the opportunity to hold my baby in my arms as she took her last breath here on earth and ascended home to you Dear Lord,” Debbie wrote to everyone, to Alyssa, and to God. “Now, my little angel, fly at last. No pain. No suffering. Peace at last! I will love you forever Alyssa Marie Mathas!! Love Mom!”



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