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How to help

A four-day benefit concert series and beer unveiling, dinner and silent auction runs Thursday through Sunday to help raise money for Eric Swanson and Patty Sobczak's medical bills.

A four-day benefit concert series and beer unveiling, dinner and silent auction runs Thursday through Sunday to help raise money for Eric Swanson and Patty Sobczak's medical bills.

THE SCHEDULE:

Thursday

* Fitger's Brewhouse, Starfire Lounge, 9:30 p.m.: Pearl Ale unveiling

Friday

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* R.T. Quinlan's, 10 p.m.: Centerville All Stars, Charm School

* Carmody Irish Pub, 10 p.m.: Sloe Loris, Jamie Ness

* Pizza Lucé, 10 p.m.: Trampled by Turtles, Jerree Small

Saturday

* Beaner's Central, 8 p.m.: Sarah Softich & Jason Wussow, Jeremy Messersmith

* R.T. Quinlan's, 10 p.m.: State Champs, Surfactants, The Alrights, The Keep Aways

* Carmody Irish Pub, 10 p.m.: Teague Alexy, Lookdown Moon

* Pizza Lucé, 10 p.m.: Big Time Jazz Orchestra, Tangier 57, The SuperTacks, Charlie Parr

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Sunday

* Beaner's Central, 4:30 p.m.: Low ($15 limited seating, tickets sold separately)

* Mr. D's, 4 p.m.: Silent auction, spaghetti dinner, Father Hennepin ($10 tickets sold separately)

More information is available at www.pearl.perfectduluthday.com .

t's common for babies to get colds, but 8-month-old Pearl Swanson's first cold has her parents frightened.

"It's scary enough to have your average child be sick," Patty Sobczak said. "But to have a baby that has a damaged heart, it's really scary."

Scared is how Patty Sobczak and Eric Swanson have felt since the night of Oct. 21, when Patty, along with a team of emergency medical technicians, rushed Pearl in an ambulance from Duluth to Minneapolis Children's Hospital.

That's when she heard the words that changed her family forever. Her daughter, one of two the couple adopted from Ethiopia, has idiopathic dilated cardiomyopathy, a rare condition that enlarges the heart and prevents it from functioning properly.

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"The cardiologist told me that a third of these patients improve on meds, a third will be on meds for the rest of their life, and a third will need a heart transplant," Patty said.

Those words took time to sink in. Though Pearl had been sick for so long, no one brought up the possibility of a heart transplant until that moment.

"I tried to ask questions," she said. "I just couldn't form the questions that I had."

The family has other problems, including lack of private health insurance. Eric is self-employed as a recording engineer at Sacred Heart Studio and Patty is a stay-at-home mom.

Though the girls are on state medical assistance -- including a $100 a month for prescriptions and $1,200 a month for Pearl's past medical care -- the bills pile up.

"We already had to pay for the adoption by refinancing the house," Sobczak said.

'WE FELL IN LOVE WITH THEM'

Eric and Patty were experiencing severe jet lag when their plane touched ground on July 30 in Addis Ababa, the capital of Ethiopia, 9,000 miles away and a 24-hour trip from home.

But that quickly dissipated the next day when they met their children.

"You just don't think about much else," Swanson said.

The couple, who have been together for 14 years and married for five, had wanted children for years, but because Patty struggled with infertility and Eric was a testicular cancer survivor, they considered adoption.

They decided to go to Ethiopia, a country that by some estimates has more than 5 million orphans, in hopes of finding an infant.

Within three months of applying and paying the $30,000 adoption fee, they found two. On May 18, the parents were informed by an Ethiopian agency about Edidya and her fraternal twin sister, Dibora, born March 22.

"All we had was that picture," Sobczak said. "But I knew, the minute I saw their photo, the reason we did not have children before is because we were waiting for these two babies to be born. The intimate connection was immediate. I knew their names.  I named Pearl first, then Ruby, and I felt a love I had not even imagined begin to grow."

Arrangements were made for the couple to make the journey to pick them up, but then they got the news that one of the babies was HIV-positive. Later they were told that both babies had the virus.

"It was a scary proposition to think about raising two HIV-positive children in Duluth, Minnesota," Sobzcak said.

It would mean the family would face prejudice and medical complications for the rest of their lives. Instead of being able to go to Africa in a few weeks, they would have to fight with the Homeland Security Department and wait several more months to bring HIV-positive babies into the country.

Eric and Patty decided to do it anyway. They worked almost a month to cut through the red tape and bring them home as early as possible for treatment.

"How could we not?" Patty said.

Then they got good news: The babies had been retested and found not to be infected with HIV. Within two weeks, they went to pick them up.

Less than a week later after meeting the girls for the first time, they were back in Duluth.

'WE COULDN'THAVE BEEN HAPPIER'

After months of uncertainty, Eric and Patty could finally enjoy having children and family life.

"It was absolutely wonderful," Swanson said. "We couldn't have been happier."

Eight days later, on Aug. 16, Pearl was having difficulty breathing and wouldn't eat. The parents rushed her to the St. Luke's emergency room about 4:30 a.m. Pediatricians Lylan Park and Gretchen Karstens said they worried that her respiratory difficulties were due to a heart problem and transferred Pearl to St. Mary's Medical Center's pediatric intensive care unit.

Eric and Patty said doctors there didn't hear the murmur and diagnosed Pearl with a respiratory infection. She was treated and sent home the next day.

But Pearl's ailments worsened. She had four ear infections over the next two months and had more difficulty eating and breathing. As Ruby was thriving and growing, Pearl became increasingly frail.

Friends and doctors downplayed the parents' concerns.

"We were told that you can't compare the two children," Swanson said.

Everything came to a head on Oct. 21, when Pearl was breathing rapidly and was unable to suck on her bottle without choking. They took her to the St. Luke's emergency room, where an X-ray showed her heart was enlarged.

Later, they went to St. Mary's emergency room, where a doctor told them the baby had congestive heart failure and needed to be taken immediately to Minneapolis Children's Hospital.

As Eric stayed home with Ruby, Patty went with Pearl. In Minneapolis she learned her daughter has idiopathic dilated cardiomyopathy, a rare condition that stretched and enlarged her heart, preventing the muscle from pumping blood in efficiently.

Dr. Kelly Gleason-Han, who diagnosed the baby's problem the night of Oct. 21, said isolated cardiomyopathy is extremely rare in children and it often takes years before it's known if children will be able to live normal lives.

Though Pearl is improving while taking six medications four times a day, and she has been able to eat and gain weight, her parents fear that her heart could still fail.

"The trick is to figure out what symptoms may be congestive heart failure and what may be due to just a cold or teething or any other childhood ailment," Swanson said.

They now have to adjust to a different type of family life.

"Only one doctor has said she's going to do well," Sobzcak said. "The rest of the other doctors say, 'I don't know.' It's very scary, very frightening."

Brandon Stahl covers health. He can be reached at (218) 720-4154 or by e-mail at bstahl@duluthnews.com .

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