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Neurofibromatosis Patient Moves on Ahead

CCH Newsletter - Summer 2011

Emily Parker with her dad, 

Emily Parker has neurofibromatosis type 1 (NF 1), a genetic disorder that ranges in severity from almost imperceptible to major.  

As such disorders go, NF 1 is common, occurring in about 1 in 3,500 births. The two other forms of NF — neurofibromatosis 2 and shwannomatosis — are much rarer.

Emily was diagnosed at the age of 9 months after she broke her left leg and it didn’t heal. On advice from her doctor, her family took her to the orthopedic department at the Texas Scottish Rite Hospital for Children in Dallas, where she is still seen from time to time.

Learning to live with NF

For Emily, this early diagnosis began a lifetime of medical appointments and treatments for NF, which is chronic and can be debilitating. Now a resident of Sugar Land, Texas, Emily’s care is managed by John Slopis, M.D., associate professor in the Department of Neuro-Oncology and medical director of the Neurofibromatosis Program at MD Anderson.

After a leg break, Emily often wore an Llizarov, a circular brace-like framework, on her leg to keep it stable during the healing process. At age 10, another broken leg was mended and her Llizarov was removed. However, the leg broke again and her doctors began to discuss possible amputation.

Her mother was at first reluctant, her dad was neutral, but Emily was ready to consider it. She received counseling at MD Anderson and at Scottish Rite Hospital, and made the decision to amputate her left leg below the knee.

“I don’t remember a time when I didn’t have NF,” Emily says. “NF, along with a brace, a cast or an Llizarov, has always been a part of my life. When the doctors talked to me about amputation, I was ready to be done with the pain ― I couldn’t keep up with other kids.

Emily takes her disease on the road

Throughout her young life, Emily has been an advocate for NF, and has spoken to the Texas Legislature about an NF bill to fund research for the disease. She has also helped with fundraising for the disease. “I’ve met everyone who has anything to do with NF,” she says.

The Cheniere Energy RAAM team visited the 
Children's Cancer Hospital to celebrate Christmas 
in July. Pictured (from left) are Pat Outtrim, 
Cheniere Energy vice president, regulatory affairs; 
Eugenie Kleinerman, M.D., division head, 
Children's Cancer Hospital; Kirk Gentle, insurance 
agent with Marsh & McLennan Agency and lead 
cyclist in the Team Making Cancer History for 
RAAM; Emily Parker, pedal partner for Gentle's 
team; and John Slopis, M.D., medical director of the 
NF Program at MD Anderson.

Since 2005, Emily has been the pedal partner for the Cheniere Energy Making Cancer History Race Across America (RAAM) cycling team. This 3,000-mile, cross-country bike ride is one of the most challenging endurance races in the world. It’s a symbolic demonstration of how teamwork, research, persistence and ingenuity can triumph over obstacles such as neurofibromatosis, cancer and other life-threatening diseases. Funds raised by the Cheniere team return to 
MD Anderson and some of these monies are directed toward pediatric NF research.

This year for the first time, Emily will expand her pedal partner role from representing and encouraging the RAAM team to being a part of the team. She is riding along on the race as the RV manager, making sure that all the supplies are in stock, and is part of a team of 11 who will travel from the west coast to Annapolis, Md. Her dad will be with the team as well, serving his third year as crew chief.

Emily and Charles Parker join 
Kirk Gentle (left) in Annapolis, 
Md., to celebrate his completion 
of the 2011 Race Across America 

“It’s nice to know that somebody out there is trying to find a cure for your disease,” Emily says.

After all these years, Emily counts Slopis as a good buddy. “He’s awesome and really nice. He knows what he’s talking about, too.” Through the MD Anderson Children’s Cancer Hospital, Emily has attended Camp Star Trails, Camp A.O.K. and has also been a part of the Children’s Cancer Hospital ski trip to Park City, Utah.

NF Treatment at the Children’s Cancer Hospital

The Children’s Cancer Hospital is one of the few hospitals in the country specializing in the care of children with neurofibromatosis, who may also suffer from pediatric brain tumors as well as peripheral nerve and spinal tumors.

Treatments include chemotherapy, surgery and radiation, or any combination of these. And because many pediatric NF patients experience learning disabilities, the Children’s Cancer Hospital has developed a special intervention program to assist these patients with educational support needs.

Although some forms of the disease are genetic, about half the cases of NF occur spontaneously, Slopis says.

As Emily reaches adulthood, she will receive treatment at the Neurofibromatosis Clinic, one of the few clinics in the nation dedicated to the long-term care of NF patients, who are subject to headaches, epilepsy, spinal deformities and cardiovascular problems in addition to tumors.

© 2015 The University of Texas MD Anderson Cancer Center