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Wesley Chapel teen loses bout with rare skin condition

Sean Bartell in 2013 at his National Honor Society induction ceremony.

Bartell family photo

Sean Bartell in 2013 at his National Honor Society induction ceremony.

TAMPA — He had a cold.

It was Dec. 15 and Sean Bartell, a very normal, healthy 16-year-old boy who spent his time either studying or playing video games, felt sick. He saw his pediatrician, who diagnosed an upper respiratory infection.

The next day, his body was covered in red bumps. Was it measles? His parents, well-known Wesley Chapel community philanthropists Paul and Jamie Bartell who volunteer as Santa and Mrs. Claus each year, worried.

By the third day, Sean was in the hospital, his skin blistering and coming off in sheets. At least 37 percent of his body was involved. The blisters attacked his mucus membranes, his eyes, his mouth. He couldn't see or speak. His tongue looked like a piece of charcoal, his dad said. His lips swelled to three times their normal size.

Doctors diagnosed Sean with an extremely rare condition called toxic epidermal necrolysis, affecting only one or two people out of 1 million each year, according to the National Institutes of Health. It's often caused by a reaction to medications such as antibiotics, sulfa drugs and ibuprofen.

His parents don't know what caused it, if it was a medication at all. Sean, a junior at Wesley Chapel High School, was left vulnerable by the loss of skin. He developed MRSA, which infected his blood. His temperature spiked to 106 degrees. On Christmas Day, he stopped breathing and was intubated. Then his heart stopped. It took nine minutes of chest compressions to get it beating regularly again.

His parents waited by his bedside at Tampa General Hospital to learn the toll of those minutes of restricted oxygen to his brain.

"It's a helpless feeling," Paul said on Monday evening, as he and his wife watched their son, waiting for him to blink or twitch, to come back to them. "You can't do anything."

But Wednesday brought horrific news. A scan showed no brain activity.

Sean was gone.

We are "saddened to announce the passing of our son Sean," Paul wrote on his Facebook page Wednesday afternoon. "He has gone to Heaven to be with loved ones that were there waiting for his arrival. Thank you for all of the prayers. God needed him more than we did and we were lucky that he let us have Sean for 16 wonderful years on this earth."

Elizabeth Mead, a family friend, said the Bartells' friends and family gathered at the hospital Wednesday — New Year's Eve — to say goodbye. She said doctors planned to turn off Sean's respirator that evening.

"When you lose a child, there is nothing anyone can say to make it better," she said. "When you lose your 16-year-old, there are no words."

• • •

Sean was quiet, studious and fifth in his class academically, his dad said. He was determined to study biology at Vanderbilt University, with medical school likely afterward. The Bartells also have a 21-year-old son. Paul works as a vacuum sales engineer and Jamie is in accounting, but in Wesley Chapel they are known as Mr. and Mrs. Claus.

"There is no one who makes you feel more of the spirit of Christmas," said Stephanie Watts, with the American Cancer Society. The Bartells, who have lost loved ones to cancer, also volunteer much of their time to Relay for Life. Watts has known the Bartells for several years and said volunteering has been a family affair for them.

"The two boys have always been right alongside their parents," at meetings and events, Watts said. "Paul and Jamie do such a good job of making sure their kids understand the value of giving back to others."

Paul, who begins growing his Santa beard in June, visits elementary schools and nonprofits.

The entire family brought food and visited with cancer patients at the Hope Lodge on the Moffitt Cancer Center campus a few days before Sean became ill.

Every Christmas Eve, they host an event on their lawn for anyone who wants to come. There's free hot chocolate and cookies. The Bartells spend all year collecting and buying toys, so every child who comes gets a free one.

Paul built a sleigh, with the red seat from a 1986 Ford Tempo he found in a junkyard. Nearly 700 people came in 2013.

• • •

In December, the Bartells weren't sure if it would continue. But Sean had his best day of his ordeal on Christmas Eve. He was out of ICU. He got out of bed, showered, went to the bathroom. He couldn't see or speak, but he could motion with his hands.

Neighbors and friends set up the party. Jamie stayed with Sean. Paul drove the 45-minutes north, put on his suit and became Santa Paul, even though he hadn't slept in days.

It rained and thundered, but he was Santa for 300 people, before heading back to the hospital that night. It was the next day, Christmas, when Sean's health plummeted.

"They are just an all-around wonderful family," said Mead, a former neighbor.

She began volunteering for the American Cancer Society after Paul knocked on her door, introduced himself and asked her to join his Relay for Life team. She is now the co-chair of the Wesley Chapel event.

Mead set up a fundraising page on gofundme.com to raise money to help the Bartells.

"It's a surreal situation," she said. "I can't believe this is actually happening to this poor family."

Contact Erin Sullivan at [email protected]

>>fast facts

How to help

To donate, go to gofundme.com/je2xf8 or call Elizabeth Mead at (813) 500-1589.

Wesley Chapel teen loses bout with rare skin condition 12/31/14 [Last modified: Thursday, January 1, 2015 7:06pm]
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