Burgy, Andy

WAUNAKEE - Andy Burgy, age 9. 
On Dec. 30, 1993, Andy became an angel here on Earth and on March 25, 2003, he became a real angel in heaven. His disease made his life difficult, but he lived it with great courage and a smile on his face. He is survived by his mom and dad, Mary Jo Burgy and his very special friend, Todd and Brent Burgy (Ronald Dunn); his best friend and loving twin brother, Alex; his grandparents, Gary Burgy, Sharon and Jim Cummons, and Joe and Marione Weeks; his great-grandmothers, Elsie Laclaw, Violet Vannatter and Emma Burgy; his Aunt Sheri; Uncle Brent; cousin, Cole; Aunt Keri; Uncle Jay; cousin, Caleb; Uncle Rob Weeks; cousins, Nicole and Peter; Uncle Jim Weeks; and many other special aunts, uncles and cousins, as well as his furry companions, Lizzy, Boston, Bear and Tigger, who never left his side. 

Funeral services will be held on Saturday, March 29, 2003, at 11 a.m. at ST. JOHN'S CATHOLIC CHURCH., Monsignor James Gunn will officiate. Friends may call on Friday, March 28, 2003, from 5 p.m. until 7 p.m. at WINN FUNERAL HOME, Waunakee. Friends may also call on Saturday from 10 a.m. until the time of the service at the church. Burial will take place in the church cemetery. 

The family would like to thank Dr. Gary Williams, Dr. Susan Carson, the UW Burn Unit, the UW Children's Hospital, and the UW Pain Clinic for their continued efforts to help Andy and for their loving care; to Hospice for their care and support; to Catalyst and Amy Yelk for their tender loving care; Heritage Elementary School teachers and all of the wonderful friends he made there; Meriter Hospital and Sun Prairie Health Center and all other friends, family and community that helped support us through Andy's life. Through his short life Andy was able to touch many lives. 

Andy, you are one of our special sons. You have given us so much in your short life. It is now time for you to spread your wings and fly where there is no pain. Where you can freely run, jump and play. You worked very hard here on Earth to get to heaven. We are sure you are having the best time at Camp Heaven. Our hearts break today, but there are also full of your smile, giggle and your love. Our lives changed when you entered it and they change now with you gone. We are so honored that God chose us to be your family. You may not live withy us here on Earth, but you will live in our hearts forever. We love you and miss you, Poohbear. 

Love, Mom, Dad and Alex.

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Boy With Rare Skin Disease Dies

Andy Burgy Died After Deciding He Didn't Want Another Transfusion And Didn't Want To Use His Feeding Tube.

Wisconsin State Journal

Friday, March 28, 2003
Beth Williams Wisconsin State Journal
WAUNAKEE

Nine-year-old Andy Burgy died Tuesday afternoon from complications of a rare genetic skin disease that made it painful for him to be touched.

But Andy never complained and how he lived his life touched everyone who knew him, family and friends said.

"He never understood what his courage meant," his mom, Mary Jo Burgy, said. "He was a silent hero. He was a silent teacher."

Andy had epidermolysis bullosa. The genetic skin disease causes the outer layer of the skin to blister and slough off at a mere touch, leaving behind painful wounds that resemble severe burns. There's no cure for the disease and no treatment other than narcotic painkillers and bandaging the skin.

Andy's story convinced construction firms to work together to build an addition to the family's home so Andy wouldn't have to endure a torturous trip upstairs for baths and bandage changes.

After his story was featured in the Wisconsin State Journal in January, area schoolchildren began sending cards, poems, and letters and hosting penny wars to raise money for the family.

"We totally appreciate anything everybody has done for Andy," Burgy said. "I stopped at 200 (thank-you notes) and I just have pages and pages left and I just can't do anymore."

Andy and his fraternal twin brother, Alex, who doesn't have EB, were in the same third-grade classroom at Waunakee's Heritage Elementary. Children there have been told about Andy's death and are doing as well as can be expected, Principal Sheila Weihert said.

"The kids are taking it in an appropriate way -- they're sad," Weihert said. "We had some giggles because we remembered the neat things about Andy. It was everything from his very fast wheelchair and how he talked about running over teachers and the principal, jokingly, of course, to his wonderful art and his neat cursive."

The school plans to build an outdoor memorial to Andy with a bright blue bench because that was his favorite color. Plans also call for a butterfly bush because third-graders release butterflies and it's a symbol for EB. The memorial would also have plenty of rocks because Alex collects them, Weihert said.

Alex has packed a small velvet bag of his favorite rocks to be buried with Andy.

Andy's funeral is 11 a.m. Saturday at St. John's Catholic Church, 209 South St., Waunakee.

About six weeks ago, Andy's worsening wounds meant he needed a blood transfusion. So the family took him to UW Hospital.

Two weeks later, Burgy said, Andy needed another transfusion and would require more frequent transfusions for the rest of his life.

Andy didn't want another transfusion and Burgy said the family decided the trips were too much for a child who couldn't stand to be touched.

Without the transfusions, Andy would just fade away, doctors said.

"He was in an incredible amount of pain," Burgy said. "Just getting him to the transfusion ... It didn't make any sense to us and it didn't make any sense to Andy."

Nine days before he died, Andy decided he no longer wanted to use his feeding tube.

"All of a sudden about 11 a.m. (Tuesday) he just sort of looked at me, but like he was looking through me," Burgy said.

For the next 50 minutes, Andy had small seizures but didn't say anything. The boys' father, Brent Burgy, pulled Alex out of school.

"(Alex) said Mom, Andy is looking at God right now' and he gave him a hug and kiss," Burgy said. "He went back to school and Andy died while he was gone."

Burgy spent the next three hours or so just holding her son.

"I was hanging on to him," she said. "It was the first time I was able to hold him in forever. It was wonderful."

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Click on the images to see the full newspaper article.  The complete text can be found here.

A rare skin disease makes a boy's life painful... and a bath for him is an excruciating experience, but says his mother, "He never complains."

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Andy's Courage

Story by Beth Williams
Photos by John Maniaci

Waunakee - When 9-year-old Andy Burgy cries out in pain, the first impulse is to comfort him with a hug.  That's about the worst thing you could do.

"I certainly can't snatch him up and squeeze the living daylights out of him," says his mother, Mary Jo Burgy.  "We have our own gentle hugs we do here.  And even when I do that, I end up hurting him.

Andy was born with a rare genetic skin disease called epidermolysis bullosa.  It causes the outer layer of his skin to blister and slough off at a mere touch.

"The skin will wrinkle up like a piece of tissue paper and slide off," says Dr. Gary Williams, Andy's pediatrician at UW Hospital. 

Wounds that look like severe burns mottle Andy's face and about 90 percent of his body.

Andy's hands, which are often busy drawing, show what doctors call "mitten deformity."  The normal rubbing of the fingers against each other causes the skin to be lost and the fingers to fuse together.

And then there's the pain.  Williams compares it to the burn or a scrape that never heals.

Patients have to endure excrutiating baths and bandage changes.  Most need heavy painkillers most days.

The pain touches Andy's mother and father, too.

"As a parent, you're supposed to be able to protect your children from certain things," says Andy's dad, Brent Burgy, 34.  "And you can't protect him from his pain, and I think that's the worst part."

A quiet child, Andy is used to people asking him how he's doing.

"How's it going in there, Andy?" his mother calls from his bedroom as Andy works up the courage to immerse his bandaged body in bath water, which feels like acid to him.

"Good," he yells back.

"That's his answer all the time," she says.  "He never says he's bad.  He never complains."

 *   *   *

Andy is Brent and Mary Jo Burgy's older son by about a minute.

Andy's fraternal twin brother, Alex, doesn't have the disease.  Like their parents, Alex carries a recessive gene for it.

Mary Jo Burgy says she had the perfect pregnancy.  It wasn't until Andy was born that she realized there was a problem.

"He had blue nail beds and the skin was missing on his middle finger and there were blisters around his mouth," Burgy, 34, says.

It would be a week before the Burgys could take Andy home.  "I had to learn how to take care of him," Burgy says.

There were nipples with wider openings for baby bottles.  If Andy sucked too hard, blisters could form in his mouth.

For those first years, Andy wore a few bandages, but otherwise it was hard to tell the boys apart.

Burgy recalls picking up a toddler and swinging him.

"All of a sudden, I'd go, 'Oooh, wrong one,' " she says.

Andy developed a bit slower, but he did basically everything his brother did, until about two years ago.

Then blisters began appearing more frequently and in more places.

He was bleeding and worn down, so doctors inserted a feeding tube to make sure he got enough nutrition.

By last summer, scar tissue had built up around his joints, making him unable to walk, so he started using a power wheelchair.

Over Thanksgiving 2002, doctors tried a skin graft to slow the disease, but the cadaver skin wouldn't adhere.

His parents are aware of how much things have changed since he was a baby.

"There was pain, but it seemed at least when he was younger... you could pick him up.  You could console him," Andy's father says.  "But now, with him, there's no way to hold him that's comfortable for him."

*   *   *

The boys' mother works days as a social worker at the Sun Prairie Health Care Center.  Their father works nights in admitting at Meriter Hospital.  The Burgys are separated.  Brent Burgy lives nearby in DeForest.  Each parent cares for Andy while the other works.

But Alex is Andy's near-constant companion.

The boys are in the same third-grade classroom at Waunakee's Heritage Elementary School, on the days Andy feels well enough to attend.

On the day after Christmas, Andy is comfortably in bed with his new Harry Potter pillow and comforter.  Alex runs around with new toys.

Alex hands Andy what might be his favorite Christmas gift - an electrician's voltage detector. 

It looks like a fat pen and it lights up and beeps when it detects a current, including static electricity.  Andy practically plays a sonata as he uses the detector to pick at his bandages and skin, which constantly itches.

Sick of the beeping, Alex tells him to knock it off.  "That's annoying and you know that," Alex says.

Andy just grins.

Alex retaliates, snatching Andy's Beanie Baby, a fuzzy red teddy bear, throwing it around, then tickling Andy's chin and neck softly with the wisps of the bear's fur.

Both boys giggle hysterically.

"Stop, I can't breathe," Andy squeaks.

"Well, you've got air," Alex replies.

The boys have always been very close.  Alex says he and Andy are going to share a room until they go to college.

"I've noticed when I get here in the morning their beds are pushed up together," the boys' father says.

"The one I worry about the most is Alex because Alex doesn't like to see his brother in pain.  He doesn't want to be anywhere near his brother on bath nights, which I don't blame him for because I can't stand it either."

*   *   *

At the end of December, the family celebrates the boys' 9th birthdays at Waun-A-Bowl.

Alex shreds the wrapping paper on his gifts in seconds.

Andy is much more deliberate.

"Alex, help me give this a pull," Andy says.

Andy tells his dad to fold the tape over on his next present.

"It's too sticky," Andy says as he tries to unwrap another gift.

Andy is wary of what the tape could do to his fragile skin.

He's tired, slumping in his chair.  Tears glisten in his eyes.

*   *   *

Andy has one of the most severe forms of EB, recessive dystrophic epidermolysis bullosa.

The disease is caused by a defect in a gene that prevents the skin's top layer, the epidermis, from adhering properly to the bottom layers.

Since his birth, Andy's parents learned each of them carry the defective gene even though they don't have the disease.  They had a one in four chance of passing it on.

EB's most severe forms affect about one in every 500,000 people.

Many people with severe EB succumb to infection, heart failure or malnutrition before adulthood.

"We've always hoped Andy would be the exception," Andy's father says.

A few people with EB live into their thirties.

Right now, other than bandage changes and painkillers, little can be done for Andy.

"This disease is the worst thing anyone could ever have," his mother says.  "The pain is the worst part because you can't fix it.  You're so helpless as a mom because you can't do anything.

"All this stuff, it seems like it's stuff to keep him going because nothing is going to make him better," she says.

Medical science is pretty helpless right now, too.

"This is a disease without a treatment," says Martin Hassner, executive director of the Dystrophic Epidermolysis Bullosa Research Association of America.

"The best you can do is constantly clean the wounds and bandage," he said.  "You hurt the child when you're trying to help them.  It's just mean."

*   *   *

Twice a week, Andy's bandages have to be changed and his battered skin is washed.

Before he starts, he's given morphine through his feeding tube.  Once in the tub, he sucks on a lollipop laced with the painkiller fentanyl.  He usually has one or two suckers a day.  On bath nights, he has four.

This is in addition to three daily doses of another narcotic, methadone.

When he gets out of the water, he'll be given more morphine, and the anesthetic midazolam, which clouds his memory.

Around 4:30 p.m. on a recent Friday, Andy is placed in a blue foam bath chair, which can be lowered into the water using a remote control.  Cartoons blare from the bathroom television.

He draws his breath in sharply at the tepid water's touch.

He soaks for about two hours, working up his nerve to get wet all over.

Nurse Amy Yelk, who comes to help his mom change the bandages, tells him he has to lower himself farther.

Andy nods and jerkily drops himself, hissing as the bath water bites into his blisters.

His mother is in his bedroom.  She has spread old blankets on Alex's bed and put clean linens on Andy's.

She cuts burn dressings into shapes to fit Andy's wounds.  The Acticoat dressings are sparkly black on one side and silver on the other.  Each 16-by-16 inch sheet costs $100.  It takes two and a half sheets to cover Andy.

They cost so much because they are made with real silver, which is supposed to heal wounds.  She also prepares antibacterial gauze and sleeve-like bandages with swirls of purple and blue.

"I tie-dye it every week," Burgy says.  "Most of his boo-boos ooze.  When you have white dressing and oozing stuff it makes people stare even more."

Experts estimate a family with a child with EB can spend $30,000 to $50,000 a year on bandages.  Andy's care is covered through private insurance and a Medicaid program.

Andy yells that he's ready to get wetter, and he wants his mom's help.  With a shower brush she dribbles water on his back.

"Tell me what you want to do next," she says.  "Should we do your arms?"

Andy hisses in response.

"Ow," he exclaims as water hits a tender spot.

"I'm sorry, I'm sorry," his mother says.

Andy stares at the television and soaks a few more minutes, while his mother goes into the other room.

"Mom," he cries.  "Ready."

Andy shrieks in pain as his mother carries him about 20 feet to Alex's bed.

With deft, frantic movements Burgy injects midazolam and morphine into his feeding tube.  He's still crying.

Burgy sits at his side and gently strokes his hair, telling him to try to go to sleep.  He cries and shivers in the hot room as the Disney Channel drones from a television set mounted on the wall.

"What's Alex doing?" Andy asks.

"He's eating cereal and watching Lizzie McGuire," she answers.  The living room television can be heard as well as sporadic thuds as Alex bounces a large blue ball.

Finally, Andy falls into a sort of sleep and the women start to cut off the old bandages.

When the dribble antibacterial soap and water onto his wounds, he's awake and screaming.

"Stop," he screams.  "Please stop.  Stop touching me. Stop it this minute. I mean it."

He whines "stop" softly.

"I know honey," his mother says.  "I've got to clean it."

The women work quickly, dribbling water onto the wounds and dabbing them with sterile cloths.  Next they apply the silver bandages.  Andy tries to rip them off.

Then come the gauze patches for the wounds that aren't quite as bad.  Then his legs are wrapped in sterile gauze and the tie-dyed bandages are slipped on.

The women start cutting off the bandages on his arms and the screaming starts again.

"Kill me, kill me, kill me," he screams.

"Andy, don't say that," his mother says.  "We're almost done sweetie.  I know it hurts."

There is blood all over the blanket, so they get another one to put on top of him.

The women try to comfort him, telling him it's all right.

"It's not OK," he says.

"It's not OK, I know," his mother replies quietly.

His mom washes his hair and they begin taking bandages off from his chest.  Andy starts to scratch at the skin that was under the bandages.

Carefully, the women turn the blankets beneath him so that he's facing Yelk, who holds him while his mother races to bandage his back.

He screams "stop" over and over.  His mother holds him while the last bandages are applied.  He cries, "Hurry, hurry."

When it's done, he sits on the edge of the bed and cries.  He leans into his mother who puts a hand gently on his arm.  Her other arm is around him barely touching.

After he calms down, she puts him in his bed and he falls asleep.

The bath took nearly four hours and Andy, who usually doesn't talk about his painful wounds, won't remember a thing when he wakes up.

Asked about the ordeal, Andy says:  "It's a good thing I don't remember it."

*   *   *

Bath nights have gotten better.  They used to take 12 hours without the anesthetic because Andy would insist on pulling off the bandages himself slowly, his mother said.

Until the end of December, she had to carry Andy upstairs to the family's only bathtub for his bath and back down to his bed.  The trip was excruciating for them both.

Construction workers and dozens of other volunteers added on to the family's home, building Andy a first-floor-bedroom and bathroom he can easily maneuver his wheelchair in.  The bedroom is large enough for Alex, too.  At a cost of $30,000, it was a luxury the family could not have afforded.

"He's got everything he needs in here," Burgy says as Andy wheels around his new bedroom.  "This is the happiest I've seen him in weeks."

A local artist painted a Harry Potter mural on the walls.

"I like it," Andy says.

*   *   *

The family doesn't often talk about the disease's progress.

"Alex doesn't say much about it," the boys' mother says.  "He gets scared when his brother goes to the hospital because he's afraid his brother won't come back."

The boys have therapists who are working with them on these issues.

"Right now, (Andy is) just very afraid of his pain and that it's going to get worse," she says.  "He's a perfectionist and he's very dedicated to everything he does, and he doesn't want to disappoint anybody or have to give up.  And he's very worried about when he'll have to give up."

Doctors have not said how much time Andy has.

"Some days, you hope it's soon," Burgy says.  "Other days when he's laughing and giggling, you think he's fine and will be around forever.

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People lend a hand to make Andy's life better
By Beth Williams
Wisconsin State Journal

Waunakee - For the first 8½ years of Andy Burgy's life, his family quietly cared for him without help.

But when other Waunakee residents learned of Andy's condition, they wanted to help.

Andy, 9, suffers from a rare genetic illness that causes his skin to blister and fall off at the slightest touch.

Twice a week, his mother had to carry him up and down stairs to the family's only bathtub to soak and change his bandages.  For Andy, being carried is excruciating.

In three weeks in December, volunteers built the Burgy family a downstairs bathroom and bedroom.

"He's comfortable in here and it's nice because we haven't had to carry him anywhere," said Andy's mother, Mary Jo Burgy.

Donors picked up the $30,000 cost.

"Everybody wanted to help," said Phil Simon, president of Michael F. Simon Builders.  He helped coordinate the 12 building companies, 22 subcontractors and six lumberyards that worked on the project.

Third-graders in Andy's class raised about $1,400.

But the village of Waunakee couldn't waive its $131 building permit fee.

"The village said, 'We really feel bad we can't waive this fee, but it sets a precedent,' " Simon said. " 'Oh, but when you come, you don't have to bring a check.  The secretary at the front desk and her family just paid for it.' "

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Rareness of disease discourages research
By Beth Williams
Wisconsin State Journal

Most people have never heard of the rare and potentially fatal skin disorder called epidermolysis bullosa. 

That's why it's important people know about 9-year-old Andy Burgy, his mother Mary Jo Burgy said.

The Waunakee boy suffers from EB, a genetic disease where the top layer of the skin doesn't adhere to the bottom layers.  This means the skin can blister and slide off at the slightest touch.

There are several forms of EB ranging from a few blisters on the hands and feet to internal blistering that usually causes death in infancy.  It isn't contagious.

Skin helps regulate the body's temperature, keeps nutrients and fluids inside the body and helps protect against infection," said Dr. Gary Williams, Andy's pediatrician at UW Hospital.

"If your skin is lost or doesn't work right, all these factors become issues," Williams said.  "Susceptibility to infection is a very big problem."

Many with severe EB don't survive to adulthood, Williams said.

Research has been slow at times, because it's hard to get researchers to devote time to a rare, little-known disease, said Martin Hassner, executive director of the Dystrophic Epidermolysis Bullosa Research Association of America.

The Defense Department has long offered research money because of its interest in wound treatment, but researchers have submitted few proposals, he said.

The amount of money available is small compared to resources for many other diseases.

Researchers at Stanford University are testing new ways of fixing defects in the gene that cause recessive dystrophic epidermolysis bullosa, the type of EB Andy has.

Stanford researchers have developed a bacteria to transport a normal gene into the body.  This method has worked in mice, allowing them to grow normal skin.  But they haven't tested the technique in humans yet.

"There's no reason not to have a very optimistic view," Hassner said.

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Mary Jo, Alex, Lizzy, Brent and Jon cheer Andy up.

Jon, Brent, Todd, Andy, Alex and Mary Jo enjoy a weekend away.

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