"Let’s go faster!” Faith Bohrer giggles as her mom, Karen, peddles the specially designed tandem bike they ride together near their home in Norfolk. It’s a typical request from a seemingly typical 9-year-old who loves cupcakes, puppies, polka-dot prints and Polka Dot – a small stuffed bear. Whether propped up in Faith’s bike basket on a sunny spring day or tucked under her arm during a chemotherapy treatment at CHKD, Polka Dot has been a steady source of comfort and companionship for Faith during treatment for her brain tumor.
So, it wasn’t a surprise that when Faith was chosen to represent CHKD and the state of Virginia at the Children’s Miracle Network Hospitals’ national convention in Orlando, Florida, this year, she asked whether Virginia’s flag could be hot pink with – of course – polka dots.
“Now that would be funny,” Faith declares, with the spunky and audacious attitude that inspired CHKD to nominate Faith as a CMN Hospitals Champion. Children’s Miracle Network Hospitals partners with children’s hospitals across the country, including CHKD, to raise local funds and awareness. Faith was announced as Virginia’s Champion earlier this year. She’ll be one of their 52 Champions nationwide – one from each state, plus Washington, D.C., and Puerto Rico – to illustrate why children’s hospitals are so important to their communities.
Faith’s journey with CHKD began shortly after she was born with a birthmark on her thigh. “One mark is not uncommon,” says Karen. “But over the next few weeks, she had a number of these birthmarks pop up.” Concerned, Karen sought advice from Faith’s pediatrician, Jennifer Holland-Hinton with CHKD Medical Group’s Pediatric Specialists, who referred the Bohrers to the late Dr. Virginia Proud, a medical geneticist with CHKD. Faith’s multiple “birthmarks” were actually “cafe-au-lait” (French for “coffee with cream”) spots, associated with a genetic disorder called neurofibromatosis, or NF. The presence of six or more of these distinctive marks increases the likelihood of an NF diagnosis. Faith had 20.
Neurofibromatosis affects about one in 3,000 people and causes tumors to grow in the nervous system, often on the skin and in the brain. “There are several variations of NF and symptoms vary widely from patient to patient,” says Dr. Ingrid Loma-Miller, a pediatric neurologist with CHKD. “Most cases in children are mild, causing only birthmarks or small tumors on the skin. More complicated cases include developmental delay, tumors such as optic glioma, hypertension, scoliosis and bone abnormalities. There is no way to predict exactly how the disease will affect each child.”
Though the future was unknown, the Bohrers knew they could turn to CHKD and its network of pediatric specialists to help Faith along the way. And they have.
Since her diagnosis, Faith has made more than 150 visits to CHKD and CHKD Health Centers for medical treatment, including chemotherapy at age 5 for an optic glioma – a brain tumor on her optic nerve.
The tumor has rendered Faith legally blind and affects her coordination, fine motor skills and speech. “While the tumor will never disappear, we work to slow its growth with chemotherapy,” says Dr. Herbert Bevan, Faith’s pediatric oncologist at CHKD. Managing a complicated condition like Faith’s NF takes a multitude of specially trained pediatric medical professionals, from neurologists to physical therapists to child life specialists. Thanks to CHKD’s unique pediatric network of care, Faith’s treatment includes a comprehensive team of pediatric specialists in ophthalmology, endocrinology, physical and speech therapy, neurology, oncology and radiology. “We feel so lucky to have these specialists just minutes from our home,” says Karen.
As one of CHKD’s signature services, aquatic therapy allowed Faith to improve muscle strength, coordination and endurance affected by chemotherapy treatments. “Faith always had a beautiful, bright gleam in her eye even on days when she wasn’t feeling well,” says Jill Sawyer, a physical therapist assistant who worked with Faith during aquatic therapy at CHKD’s Health Center at Oakbrooke. “She always left me feeling like it was going to be a great day, no matter what.”
Dr. Bevan has watched Faith mature over her years of treatment in the cancer clinic and enthusiastically supported her nomination as the CMN Hospitals Champion. “She can brighten up the room,” he says.
When asked what she’s most looking forward to during her time as a 2014 Champion, Faith doesn’t hesitate. “A lot of parties!” she says.
Karen and husband, Merv, will accompany Faith during her tour. She says they feel like ambassadors, too. “There are plenty of parents like us, who go to the doctor’s office and hear what no parent wants to hear. We want to create awareness for those families, and every family in the community, about how incredibly blessed we are to have CHKD in this area,” says Karen. “We want to put the spotlight on CHKD. It has done so many wonderful things for us – and not just us, but other children, too.”
Dr. Holland-Hinton practices with CHKD Medical Group’s Pediatric Specialists. Dr. Loma-Miller and Dr. Bevan practice with Children’s Specialty Group, PLLC, at CHKD.
CHKD is a Children’s Miracle Network Hospital
The mission of CMN Hospitals is to raise awareness and money for children’s hospitals across the United States and Canada. Donations raised through CMN programs remain local to support training, research and equipment purchases and to pay for uncompensated care. As a national CMN Hospitals Champion, Faith will go on the Champion Ambassador Tour to visit Washington, D.C., in October, where she will meet with Congressional representatives and visit the White House. From there, she’ll fly to Orlando, Florida, for the CMN Hospitals’ national convention at Walt Disney World, and receive a medal for meeting her medical challenges with courage. Follow Faith as she represents CHKD this year by visiting CHKD’s Facebook page for updates on her travels.