by Randolph T. Holhut
Chief of AR Correspondents
October 20, 2011
A LIFETIME LIVED IN THE TWILIGHT YEARS OF THE AMERICAN DREAM
ORLANDO, Fla., Oct. 20, 2011 -- If you think you have had a hard life, or even just a bad day, a few minutes around the "Champions" of the Children's Miracle Network Hospitals would abuse you forever of that notion.
Thursday, 66 miracle children afflicted with everything from common childhood ailments like asthma or broken bones to monumental challenges like birth defects or cancer gathered on a glorious Florida day to celebrate their achievements and triumphs at their annual Celebration at Walt Disney World.
The bright smiles from the kids cavorting inside Disney's Contemporary Resort with beloved characters Mickey and Minnie Mouse, Donald Duck and the gang rivaled the exquisitely brilliant sunshine outside.
Even Florida's Champion, Haley Richardson, a theme park veteran and bone cancer survivor, found something to get excited about. Meeting Miss America 2011, Teresa Scanlan, was the high point of her day.
When Haley was eight, she was diagnosed with osteosarcoma in her leg. The budding gymnast and cheerleader endured surgery to remove a cancerous segment of the bone, months of chemotherapy and the very real possibility that she would lose her leg. Wolfson Children's Hospital in Jacksonville , Fla., saved her leg with a new femoral prosthesis, an implant that can actually grow with her leg, eliminating the need for further operations.
Founded in 1983 in Salt Lake City, Utah, by Marie Osmond and her family, television celebrity John Schneider and others, Children's Miracle Network helps as many hospitals as possible by raising funds for hospitals around the country and Canada, according to their website.
From a telethon collecting $4 million a year when it started, it has grown to a $250 million a year juggernaut, with $4.3 billion raised as of this year. That's happened largely through the efforts of Jack Lindquist, a 38-year executive with Walt Disney Co. and author of "In Service to the Mouse." Disneyland's first advertising manager, Lindquist was the first to envision a partnership with the national telethon.
In an exclusive interview with the American Reporter, retired CMN co-founder Joe Lake and Lindquist reminisced about origins of Disney's involvement. According to Lake, CMN incorporated in 1982 and the first telethon was broadcast in 1983 in Orem, Utah, from the studios built for the Marie Osmond Show.
"Thanks to Jack, we moved to Disney in 1987 and have been involved ever since," Lake said.
"I had just met Joe," Lindquist remembered, "and bringing the kids to the park seemed a natural fit. These were kids with serious, terrible afflictions and it seemed to be the right thing to do."
"Children's Miracle Network (CMN) Hospitals provides comfort, treatment and hope to millions of sick children each year," states their website. "They may be your own children."
Each year CMN identifies a child with a "remarkable medical story" from each state, a vetting process that includes reflecting the diversity of the treatments the member hospitals provide, different age groups and the challenges the children faced, according to Aubrey Cichelli, Champions director and de facto "Mom." The children have to be doctor approved, older than three and younger than 18, and be able to fly.
"Our Champions are all Children's Hospital patients," Cichelli said. One from every state, from every age, from every economic demographic you can imagine. We have families who have never been on an airplane.
"It really shows every child who is treated at children's hospitals and the diseases are as varied as they are. We have genetic diseases, even one that has never been seen before, cancer, premature kids who have to struggle their whole life."
It's not all fun and games, either. Losing Maryland Champion Mackenzie last year to her illness was the hardest experience to go through, according to Cichelli.
"In 2010, we did two separate trips," Cichelli confided. "We did Washington, D.C., in June and Orlando in November, and between the trips Mackenzie passed away; and because we had all become so close, to lose one was tough on the group, because all these families feel it could happen to them."
Cichelli admitted that her favorite part is the Celebration in Orlando. "The most fun is to put all these pieces together and to finally get to Orlando and actually meet the families," she said. "Their stories inspire me so much. I have fallen in love with them and they mean so much to me. To have them tell me 'thank you' is the most rewarding thing.
"It's difficult to have a bad day or feel sorry for yourself after you meet these kids who have all the hope and energy in the world when on paper they have everything going against them. You meet these kids who have faced the hardest things imaginable-- heartbreaking diseases-- and they are so happy and so positive. It does put life in perspective ."
The Celebration is about the children and their stories. They describe injuries and diseases, some with unpronounceable names, in the most matter of fact tone. It's as if being sick and facing death and pain every day is a way of life, as natural as being healthy.
"I'm having a gooood time," crowed Alexander Theodorakos, 8, from the nation's capital. He and his twin sister Tessa, who likes to be called Tess, have cerebral palsy - but that doesn't stop them from doing all the usual kid things.
"I'm going to go on rides," gushed Alex. "I asked Donald to bring Huey, Dewey and Louie, and he gave me a thumbs up."
According to their dad, George, the twins were both born prematurely at 29 weeks, with mild cases of cerebral palsy. "They've been going to the hospital since they were two," he said, "getting constant therapy and botox treatments, sometimes two or three a week - and they love the hospital."
Tess said she liked Mickey the best, but did not watch him on television. "We're a little too old for that.
"We really like Pokemon."..
Tristan Kuhlman from Yakima, Wash., 13, had almost half his brain removed when he was young. "He wants to meet the President," said his Dad, Gregory. "This is something we will always remember. [It's a] long way to come, but you can't ask for more than this."
According to Tristan's biography, he had uncontrollable seizures when he was only five months old. Medications and chemotherapy could not stop the 200 to 400 seizures he was having every day , and would eventually have killed him. Doctors at Seattle Children's Hospital removed the left side of his brain. Today he is athletic and enjoys most sports even though his right arm doesn't function normally.
Christopher Armstrong, 13, from Missouri, couldn't wait to get a hug from Miss America, his eyes wide with wonder at her beauty. Christopher has chronic inflammatory demyelinating polyneuropathy, with encephalitis, an extremely rare disease of the brain that destroys the protective coating around the nerves and sometimes causes him to lose mobility and nerve functions.
Miss America Teresa Scanlan didn't seem to mind the attention, either.
"This is something I've been looking forward to all year actually," she said. "And now that the kids are all here, it's been amazing to meet some of them. This entire year I've been to visit several different hospitals and it's been incredible to see the miracles that have been happening. You see what the fund-raising is actually doing."
A double lung transplant in 2008 didn't stop Drew Husch, 13, Edmonton, from enjoying Donald Duck's company or looking forward to going on the rides at Magic Kingdom. Born with cystic fibrosis, Drew spent nine months on an oxygen tank before his family got the news that his new set of lungs was available.
Professing a love of math at school, Drew's lungs are now disease-free, but his other organs contain cystic fibrosis, and he is in constant pain.
AR Correspondent Ted Manna, then based in Denver, first covered the primary campaigns and Las Vegas Democratic debate in 2007 for The American Reporter. He is now based in Melbourne, Fla.