Providing hope to kids with disfiguring birthmarks
From her anchor desk at ESPN, Hannah Storm delivers the morning’s sports news with such style and confidence that it’s hard to believe how anxious she used to feel when appearing in public. Storm, 46, was born with a vascular birthmark under her left eye. Commonly called a “port wine stain,” it caused her emotional pain growing up. “It looks just like a black eye,” she says. “I didn’t want to go anywhere without makeup in high school and college.”
Many infants are born with a birthmark (“kissed by an angel”) that eventually fades. About 1 in 60 children arrive with a vascular birthmark. Some can cause serious health problems. Storm endured numerous painful surgeries in an attempt to remove or obscure her mark. One, while in high school, left her with third degree burns. “My parents wanted to do everything they could,” she says. “After all, if your child has a big mark on her face, people assume the worst—it somehow implies the child isn’t well taken care of.” The procedures left Storm with scar tissue. Eventually, she learned to live with her disfigurement. Three years ago, while serving as host of the CBS Early Show, she revealed the mark to a national audience as a way to reach out to others.
The good news is that effective treatments have greatly progressed since Storm was a child—and she is helping parents meet the high cost of the procedures. The Hannah Storm Foundation provides medical support for kids born with vascular birthmarks. Evan Ducker of Kingston, NY, has such a mark. Though he did not need the foundation’s financial assistance, meeting Storm inspired him. “She gave me confidence and encouragement,” says Ducker, now age 12. Says Storm, a mother of 3: “I want kids to know that nothing should hold them back from achieving their dreams.”
Empowering families of children who need heart-related surgery
Brian Littrell woke up in a hospital room ten years ago, and the first words he heard came from his surgeon: “Son, I don’t know how you were running around onstage with that heart of yours.” Littrell, a former member of the Backstreet Boys and now a solo act, had just undergone surgery to repair a small hole in his heart—a congenital defect diagnosed when he was 5. What he didn’t know—and neither did his surgeon until Littrell was on the operating table—was that a second hole was hidden on the other side of his ticker. The surgeon closed it up. “I’m truly a walking miracle,” says Littrell.
Littrell was 23 at the time of his surgery. The procedure and recovery put a big dent in his glamorous career. “My life was flourishing and moving at such a fast pace,” he says. “When I heard I needed surgery, I was terrified. When your life is in someone else’s hands, it’s emotional.” The experience inspired Littrell to start The Healthy Heart Club, a nonprofit that assists families whose children need heart-related surgery. The club’s other goal is to educate families on the benefits of exercise and nutrition as part of a heart-healthy lifestyle.
For those families facing extended treatments at facilities away from home, Littrell’s support is a huge blessing. Kris Foster of Lexington, KY, spent more than a month in Cleveland, OH, while her daughter, Julia, now 15, recovered from open heart surgery. The Healthy Heart Club contributed to the family’s gas, food, and lodging. “We had the best care possible,” says Foster. “We couldn’t have afforded it without the Club.”
“The more blessings you give out, the more you get back,” says Littrell.
Raising autism awareness
Becoming a first-time mom is perhaps one of the greatest joys in the world. That’s certainly true for actress and author Jenny McCarthy, who wrote about her experience in her book Baby Laughs: The Naked Truth About the First Year of Mommyhood. But as many moms well know, sometimes that joy is tempered by unfortunate news. At around age 2, McCarthy’s son, Evan, was diagnosed as autistic. “When the doctor told me, my heart sank,” says the movie and TV star. “I felt so sad and hopeless.”
Like other parents before her, McCarthy began devouring all the information she could find on the disorder. No matter what she learned about Evan’s prognosis (he’s now 5), she was committed to making sure he wasn’t stigmatized. “I looked at the doctor and said, ‘My son is trapped inside this label called autism and I’m gonna get him out,’” she writes in her new book, Mother Warriors.
McCarthy, 36, no stranger to criticism herself (about her sometimes racy performances), has since become one of the most outspoken critics of mainstream autism diagnosis and treatment. Her stand—that medical intervention sometimes causes the disorder—is controversial. But there is no doubt that her willingness to use her fame to open a dialogue about autism has benefited troubled mothers. In 2007, she launched Teach2Talk, a company that creates affordable educational DVDs for kids that target core speech and language and play and social skills, using therapeutic techniques like video modeling. Her work with Generation Rescue, an international movement of scientists, physicians, and parent volunteers researching the causes and treatments for autism, supports her primary goal: “I want to empower and educate parents on the treatments available to their children.”
McCarthy wants her son to know that she’s on a quest. “I will not stop being the voice for thousands of families who are suffering,” she says. “I will continue to fight for change and hope someday Evan will stand at my side and fight with me.”
Bringing the circus to hospitalized children
Film director Anthony Lucero was about to begin shooting a film about a European circus five years ago when he became gravely ill. The source of the illness was a mystery, but the symptoms were not: He was experiencing liver and adrenal failure. He spent months in and out of hospitals while doctors tried to figure out what was wrong. At his lowest moments, Lucero and his best friend Christine Harnos (an actress who, for years, played Jennifer Greene on ER), began dreaming of a way to transform his near-death experience into something that would be helpful to others. “I spent two months rapidly losing weight, feeling weak and sorry for myself, and then it occurred to me that I wasn’t getting better, but I wasn’t dead,” Lucero says. “I began to fight for my life and I decided to focus all of my energy towards turning this horrible situation into a positive.”
Doctors finally solved the mystery: Lucero was suffering from chlorine poisoning, the result of time spent in a Jacuzzi overfilled with the chemical. As Lucero began to regain his strength, he and Harnos pooled their savings and came up with a way to be positive: They started Circus Remedy (www.circusremedy.org ). The organization relies on donations and smaller grants to arrange funding for top circus performers to visit patients at children’s hospitals, camps for terminally ill kids, hospices, and refugee camps, literally bringing the experience of going to a single-ring circus to them. “When I was sick, I couldn’t stand to see all these kids going through medical treatments without experiencing any of the happiness you’re supposed to feel as a kid,” Lucero says. “The hardest thing about being sick is this lack of joy, magic, and wonder. You’re losing the things that inspire you to get better. Our goal is to restore a little of that for kids who need it most.”
Lucero’s ultimate goal is to have full circuses with tents and performers circulating the globe. “Next year, we want to bring six Cirque du Soleil performers to the sewers of Bucharest where over 10,000 children live,” says Lucero. “We want to bring The Flying Wallendas to children’s hospitals in the United States and abroad. We’re not sending in the clowns. We’re intent on bringing the world’s top and most inspirational performers to the kids so they can feel their magic and wonder.”
Provides access to screening and care for cancer survivors
When Lance Armstrong was diagnosed with testicular cancer at 25, it had already spread to his abdomen, lungs, and brain. Armstrong, one of the world’s best competitive cyclists and seven-time winner of the Tour de France, was undeterred. A combination of physical conditioning, a strong support system, and a competitive spirit took over. He declared himself not a cancer victim, but a cancer survivor. “My mother is my hero,” Armstrong, now 37, says. “She once told me ‘If you can’t give 110 percent, you won’t make it,’ and I’ve never forgotten that.” In fact, it was during treatment (before his recovery), that he created the Lance Armstrong Foundation (www.livestrong.org), thus marking the beginning of his life as an advocate for people living with cancer.
For this father of three, choosing to give back instead of putting the cancer portion of his life behind him just wasn’t an option. “I hope to live up to the words of one of my doctors—Dr. Craig Nichols—and continue to fulfill the ‘obligation of the cured.’” To do this, the foundation starts young. Armstrong is particularly proud of the work the foundation does for children with cancer. “These programs focus on physical activity and nutrition, emotional support and education as well as programs that address practical issues of survivorship for them and their families,” he says.
Included in the broad-based programs are: SuperSibs, a nationwide program designed to help empower, educate, and enable key oncology partners to help solve the problem of siblings of children with cancer not receiving adequate support; The Play Fit, Stay Fit! program at Stony Brook University, a free 12-week wellness program that addresses the physical, nutritional, and psychosocial needs of childhood cancer survivors and their families in Long Island, New York; and Ride with Emilio, a program of the Emilio Nares Foundation that provides transportation services to families whose children are receiving treatment for cancer at the Children's Hospital of San Diego. The highest goal of the foundation: “To lead a grassroots movement to reduce incidence, increase survival and offer each person with cancer the opportunity to live their life on their own terms,” Armstrong says.