On the Wings of an Angel
Father carries on son's legacy of love through bear, book.
Burke Patrick Derr was many things. If you ask his family and friends, he was a thief, stealing the hearts of everyone he met.
He was an enthusiastic young man, with life on his mind. His father would say he was a teacher - "the best in the world."
He was a collector of baseball cards and more than 300 teddy bears. He liked to shop and loved life.
But what's most important is what Burke was not - a quitter. When most of us would have thrown in the towel and succumbed to our weaknesses, Burke took life by the horns and lived each beautiful, exhausting moment to the fullest.
In the 19 years Burke was in physical form, his days were spent at odds with a disease that would inevitably end his life.
Burke was born June 19, 1978, and parents, Bob and Donna Derr, who resided in Selinsgrove, thought his minor cold symptoms were nothing more than that - a child's case of the sniffles.
But when he began to refuse his feedings and started losing weight, they suspected something more was wrong with their third and youngest child. They were right.
Tests revealed Burke had cystic fibrosis, a common disease that affects the entire body, causing progressive disability and early death. The online site Wikipedia lists difficulty breathing as the most common symptom, a result of the frequent lung infections caused by the disease. Others include sinus infections and poor growth, all of which Burke and his family dealt with during his life.
Even though Burke was easily mistaken for years younger because of the growth restraints of the disease, his family made sure he wasn't treated like a sick little boy. He learned to do his own treatments and operate his nebulizer machine. He shopped at the mall and kept up with his older brothers' sports endeavors like cheerleading, soccer and swimming - Burke even learned to dive and placed second in a district diving competition.
Burke's father is confident he is still supporting his brothers, Brian and Brett.
"I'm really proud of Brian and Brett and their positive attitudes about life in general, and I'm sure Burke is cheering them on," he said.
When Burke was 11, tests revealed he was carrying a bacteria called B. cepacia that ultimately would lead to his declination.
This knowledge still didn't stop Burke. In an eighthgrade essay called "My Gift to the World," he clearly declared the legacy that lives on today. In it he wrote that "he would like to have a cure for diseases." He said that if he could find a way for people with diseases to live longer, "they then could make contributions to the world."
Burke's life alone was a contribution to the world. To those who knew him closest and to those who didn't know him at all, he was an inspiration in a world that, even without disease, would benefit from people like Burke.
"Burke lived this day, this moment, in the best way," Bob said. "Having known Burke and meeting others with CF and terminal diseases, these people seem to always focus on the moment."
Burke P. Bear
Burke had so many teddy bears that he was teased about needing an extra room just for them.
When he was 13, he decided to collect only Boyds Bears and he even started a friendly competition with his stepmother, Linda. (Bob and Donna divorced in 1990 and both have since remarried). By 1996, he could count more than 150 Boyds Bears and about 100 bears of other makers in his collection.
It was his love of bears and his friends' love for him that led to the creation of the Boyds Collection's Burke P. Bear, created at the request of two of Burke's closest friends, Kelly and Gretchen.
Boyds Bear president Gary Lowenthal reacted almost immediately and promised to name a bear in the fall 1997 line in Burke's honor.
"It was so great of Kelly and Gretchen to do this for Burke," Bob said. "He didn't believe them when they brought the letter to him. He thought it was a joke."
Burke's final rally with the disease in May 1997 prompted the company to speed up the creation of the bear and the simple Burke P. Bear was rushed to be at his side - the now famous Burke P. Bear, as Burke would start signing his name.
"They requested to have the original prototype and a relay was set up to deliver the bear to the hospital," Bob said. "He got to see the bear before he passed away. You gotta hand it to the Boyds people."
Burke died June 17, 1997, and left behind many lessons on life, living and cystic fibrosis.
Dealing with CF
His father continues to pass on these lessons through Pennsylvania Cystic Fibrosis Inc., an organization he founded in 1985 that is dedicated to helping Pennsylvania individuals and families affected by CF, and to raising funds for CF research.
"People need to know about the disease," Bob said. "From an awareness standpoint, if you're ever going to find a cure, people need to know."
Bob was involved in fundraising with the Cystic Fibrosis Foundation and asked the director if any of the money comes back to Pennsylvania. The answer was no.
All the money raised through the national organization was going directly toward research, not the cost of medications, transplants, therapies and air conditioners that become so important in the life of someone with cystic fibrosis.
"For people with CF, it (an air conditioner) really is a necessity," Bob said. "While we need the national organization to raise funds for research, we also need an organization to help people in PA," he continued. "A national foundation needs a national staff and you need to pay your people. I wanted to set up all volunteers and our offices are in my own home. There's no overhead. What we make, with the exception of administrative costs, all the rest goes to helping families or research projects."
PACFI, he said, is the only CF organization that helps families directly. The group also tries to support researchers who have progressive ideas but aren't funded a lot by the national foundation.
Between 30 to 40 people are involved in the organization and about a dozen more consistently work for the group.
Active board members include Charles "Chip" and Denise Amer of Muncy Valley. Chip is the PACFI vice president and the couple has a son with cystic fibrosis.
Donna Amer, Chip's mother, is a PACFI board member and Ted and Lana Dougherty, Chip's in-laws of Montoursville, also are members.
Williamsport supporters include Diane and Tom Jones and their son-in-law, Bill Kiessling. The Jones had two daughters who died due to CF several years ago. Glenda and Bob Wheeler of the Fifth Avenue Tavern have held auction fundraisers for the organization in the past.
Million Dollar Bear Campaign
The dedication of the Burke P. Bear and a visit with psychic friend Steve Mucci prompted what has become known as the Million Dollar Bear Campaign.
During Mucci's contact with Burke, Bob was able to let go of guilt and realize that Burke was in a much better place. In fact, he told his father to "think of the most fun you ever had on earth, multiply it times one million, and that's what it's like here."
The campaign started small, with Lucinda Marks of Lucinda's Country Crafts and Collectibles offering to give PACFI $1 for each Burke P. Bear sold at the store.
Over time, more than 163 retailers joined the campaign in 35 states and the Boyds Collection donated about $26,000 toward cystic fibrosis research projects.
"I just can't say enough good things about these people," Bob said.
Bob and wife, Linda, began doing Burke P. Bear signings for retailers who joined the Million Dollar Bear Campaign. They believed they were signing these bears at the hands of Burke.
After raising about $50,000 through the campaign, the Burke P. Bear took its first road trip on what would become Burke's Tour.
With the help of Cystic Fibrosis Worldwide, the bear has even traveled as far as Europe.
Bob said the organization was instrumental in the tour because, without their help, they didn't see the project having more than just a Pennsylvania impact. Part of the Burke Bear funds have even helped CF Worldwide build the Tblisi Clinic in the Republic of Georgia.
"The bear has visited about 38 states and has traveled to more than a dozen countries," Bob said. "The only stipulation was a photograph from each place he visited."
Through his travels, PACFI voted the bear "The Pennsylvania Ambassador for Love, Peace, Having Fun, and Curing Cystic Fibrosis," state House Resolution No. 198.
The campaign and tour has provided about $350,000 to CF research projects.
The Boyds Collection retired the original Burke P. Bear in 2002, but the Boyds company continued to give $12 from the sale of each bear to PACFI projects.
10 years later
It's been 10 years since Burke P. Derr passed on his journey to Burke P. Bear and in honor of him and the anniversary, the bear recently was reissued.
The bear is the same, with the exception of "Burke P. Bear" stamped on his paw and a tag that talks about a young man who lost his battle with cystic fibrosis.
It is available at most Boyds retailers in the area, but not all know about the fundraiser. Percentages of sales of the bear, which retails for $15 to $20, still are helping PACFI reach its million dollar goal.
In conjunction with the 10th anniversary, Bob's book, "Burke's Tour: Ambassador of Love," was published in December.
"I just knew that at some point I was going to write a book about Burke's life. Through all of my involvement in CF and having all those years that Burke was with us ... I knew before he died and even if he hadn't that I needed to write."
Bob's goal with his book was to keep it relatively short, easy to read and loaded with pictures.
Retailers across the state are conducting fundraisers that include sales of the 10th anniversary bear and book signings.
The tour includes stops at Otto Book Store and Adelyn's from 4 to 8 p.m. Friday. The book also is available at Barnes and Noble, Amazon. com, Borders and Waldenbooks and also directly from the publisher at www.outskirtspress.com/burkestour. It is $7.95.
Other major fundraisers include the Mike & Dot's II/Yuengling Brewery Chili Cook-Off and auction that benefits PACFI, which was held Saturday. Bob said Mike & Dot's has donated more than $170,000 to the organization in the last 12 years.
The PACFI golf tournament is held each year at the Turbot Hills Golf Club in Milton and raises between $12,000 to $15,000 annually and PACFI sells apple dumplings at Mifflinburg's annual Christkindl Market, donating about $3,000 each year. Many other fundraisers are held throughout the year and more information is available at the organization's Web site, www.pacfi.org.
Burke was many things, and, through his passing, he lives the words of his favorite song - Celine Dion's "Fly."
He is hope that continues to touch the lives of millions.