Former star Valley athlete's daughter fights rare cancer
By Braden Ashe
Published: Wednesday, June 26, 2013, 12:36 a.m.
Former University of Pittsburgh track and field star Mycah Clemons thought the changes in shape and gaze of her 3-year-old daughter Maiyanna's eyes suggested an eye problem.
The diagnosis delivered last month by Children's Hospital of Pittsburgh of UPMC, however, proved more harrowing than she could have imagined.
Maiyanna Clemons-McCarthy was diagnosed in late May with Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive type of tumor that arises in the brain stem.
Within days of the diagnosis, Maiyanna had gone from “swimming and playing princess” to undergoing a series of radiation treatments to combat the inoperable tumor's insidious effects.
Clemons, 28, of Penn Hills has launched the Maiy's Miracle Foundation in support of her daughter.
The 2003 Valley High School graduate said the foundation was created in part to spread awareness of childhood cancer and increase funding and support for DIPG research.
Currently, the foundation also is focused on helping fund Maiy-anna's treatment.
The 3-year-old does not qualify for the UPMC pediatric center's clinical trials. She is undergoing a holistic ritual that entails a radical diet change and frequent radiation therapy.
“We've looked into everything, and there's nothing really promising out there to fight it,” Clemons said. “It's a rare condition, so there's not much being put toward research for alternative treatment methods.”
Attempts to interview several staff members in Children's Hospital of Pittsburgh's Neurology and Neuro-Oncology departments regarding Maiyanna's situation were unsuccessful.
Maiy's Miracle has raised about $4,000 to help fund the treatment thus far and its Facebook page has amassed close to 200 likes.
Clemons promoted the foundation and its web site (www.maiysmiracle.org) last weekend during New Kensington Community Days. The former college athlete plans to draw attention to Maiyanna's plight and DIPG at future events.
“Whatever happens with Maiy's situation, we're going to be passionate about this issue,” she said. “The hope is that the foundation can help find better treatment methods and earlier diagnoses.”
Judging by the size and severity of Maiyanna's affliction, Clemons estimates that the tumor developed within the first few months of her daughter's life.
According to the DIPG registry, the cancerous tumor grows in a way that makes removal impossible. But Clemons said earlier detection and treatment of the tumor would have been instrumental in her daughter's fight.
“I thought something could have been wrong for months,” she said. “But I took her to a number of pediatricians and they all assured me that everything was OK.
“If we were able to get an MRI at that stage, we could have caught it sooner and began treatment.”
Clemons hopes that, one day, Maiy's Miracle will help fund prescreening cancer tests for newborn children whose families cannot afford those services.
Helping to raise money for such initiatives is the 28-year-old's brother, NFL wide receiver Toney Clemons. Drafted by the Steelers in 2012, Toney now plays for the Jacksonville Jaguars and is using his influence as a professional athlete to support his niece and raise DIPG awareness.
The Jaguars receiver called on his alma mater, the University of Colorado, last week for support. The university's Buff Club, a fundraising arm of CU athletics, will soon make a $2,500 donation to the foundation after Toney delivered a proposal to the booster club on his niece's behalf.
Toney Clemons is raffling autographed footballs later this month in support of the foundation.
“Maiy has a very strong support group and a loving family,” her mother said. “Everyone is doing their part to help out and make it easier on her.”
DIPG accounts for 10 percent to 15 percent of brain tumors found in children but is the most common cause of death due to brain tumor among the age group, according to the DIPG registry. The median age at diagnosis is 5 to 9 years old.
Most studies show a median survival of less than one year following diagnosis, indicating minimal improvement in the past 25 years.
According to the Childhood Brain Tumor Association, brain stem tumors are among the most dreaded because the brain area controls many of the body's most vital functions, including breathing, balance and facial expression.
Purple shirts and wristbands can be purchased from the fundraiser's web site, where donations also can be made in support of the cause.
Purple is Maiyanna's favorite color.
Braden Ashe is a staff writer for Trib Total Media. He can be reached at 724-226-4673 or firstname.lastname@example.org.
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