Wednesday, December 7, 2011

Awesome story

link if you want to see the pictures.

Bountiful mom runs New York City Marathon for her son
Fundraiser • Run aimed at raising research money into rare skin disorder.
By Carol Lindsay

Special to The Tribune

Published: December 5, 2011 11:26AM
Updated: December 6, 2011 01:27PM

Carol Lindsay | Special to the Tribune KayDee Troop ran the New York City Marathon to raise money for research into a rare skin disorder that affects her son, Zack, left. The Bountiful mom, who is holding her daughter Elizabeth, wears the medal she brought home from that race. Not even a broken leg could keep KaDee Troop from competing in one of the world’s largest marathons.

The Bountiful mom wasn’t doing it for herself. She was running the New York City Marathon for her son.

Troop, whose 9-year-old son Zack suffers from a rare skin disorder that makes it painful to perform even the simplest of daily tasks, ran the streets of New York City in early November to raise research money for a condition known as Recessive Dystrophic Epidermolysis Bullosa.

It took her six hours and 40 minutes to complete the race. But she did it — with a broken leg — and placed 46,147th out of 46,795 runners.

“It was awesome to be able to run in honor of my son,” she said. “Every day of his life is a marathon. He goes through so much and he does it with a smile.”

Because of his genetic disorder, Zack develops wounds, similar to third-degree burns, on his body when he encounters the slightest friction from everyday activities. Other wounds can form internally along, say, the digestive tract.

It’s an uncommon ailment that manifests itself in about one in a million newborns.

When asked about why his body is covered in bandages, Zack, who attends third grade at Bountiful’s Tolman Elementary, is apt to say that he got in a fight with a bear or a Tyrannosaurus rex. Why? Because he gets tired of explaining his condition.

Zack was born in 2002 in Nevada. Not only was he missing skin from the back of his head, elbows and legs — not to mention his fingers, which had been sucked down to the tendons while in the womb — he was missing a family.

His birth parents had been unable to care for him and, consequently, had sought out an adoption agency to take him. Although some adoption agencies were reluctant because of Zack’s medical needs and uncertain future, one agreed to look for a permanent home.

That search led to the Troop family.

The Troops, who had begun the process of adopting a baby, were told about an infant with a life-threatening condition that desperately needed a home. The child wasn’t expected to survive a year.

The family went to meet the baby, who had just been discharged from intensive care, and immediately fell in love.

“We knew he was ours,” KaDee Troop said.

With some help from a Vernal family — whose teenage daughter has the same disorder — the Troops learned to care for their fragile boy.

“The mom knew just what to do,” said Troop, who recalled the family arriving on her Bountiful doorstep after learning, from a pediatrician, of their plight. “We were struggling with how to care for this infant covered with open wounds. It was amazing to watch this mom. She gave him a bath and showed us how to dress him and care for him. She showed us what to do and from then on we had hope.”

And so this child, who wasn’t supposed to last a year, is now halfway through grade school.

Although he has challenges — he spends two hours a day getting his bandages changed, he needs a school aide to help him with instruments as simple as scissors, he relies on a voice-activated computer to avoid the painful process of writing — Zack remains an active boy.

He began reading at age 3 and now ranks above grade level for both reading and math. He loves to swim. He enjoys travel. And he plays lots of video games.

“We work hard to make sure there are wonderful things that Zack can do,” Troop said. “He pretty much does anything he wants to do. Sometimes we just have to find a way to adapt.”

You might say that Troop has done the same. Despite breaking her leg during training, she decided to not to give up on the New York City Marathon. With strangers cheering her on during the 26-mile route — offering suckers, tissues and drinks — the race turned out to be one of the highlights of Troop’s life.

“I think it was great that she did it,” Zack said.

Having crossed that finish line, Troop raised $3,588 for the Jackson Gabriel Silver Foundation to pay for research.

Want to donate?

O KaDee Troop is raising money for research into Recessive Dystrophic Epidermolysis Bullosa online


© 2011 The Salt Lake Tribune
Bountiful mom runs New York City Marathon for her son
By Carol Lindsay

Special to The Tribune

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