Running Down NF: West Hempstead Native Asks Community to Join Her Fight

At 8-years-old Kristina Diaz was diagnosed with neurofibromatosis (NF) after her mother noticed marks that resembled mosquito bites on her skin. 

At 18 she lost her hearing after tumors developed in her brain and other parts of her body. Just as she was preparing to head off to college, she was forced completely change how she communicates, learning to read lips and sign.

"It was a big transition," Diaz says. "I was nervous and scared. I had basic understanding of American Sign Language from learning privately in High School during my last year in the morning to prepare myself for when the time would come. " 

Now 23-years-old, the West Hempstead native has undergone eight long surgeries and is currently receiving chemo treatments as part of a clinical trial in hopes of preventing the tumors that have taken over her body from growing.

Yet despite her exhaustive medical procedures and sudden hearing loss, Diaz hasn't let her condition hold her back.

She graduated from Nassau Community College after two years of studying Communication Arts as well as American Sign Language (ASL) and transferred to Rochester Institute of Technology (RIT) in 2008. RIT is a college connected with the National Technical Institute of the Deaf (NTID).  

"My two years at RIT has enabled me not only to fit into deaf culture, but also figure out my path as an artist," she says,

Diaz was forced to leave the school in December 2008 to go under the knife again to treat a tumor that was located on her brain, but while on the table she found her calling.

"That surgery was one like no other," she says, explaining that it left her with short-term memory loss and close to death. "While I was dazed and in 'dream land,' I became so intrigued in the workings of the mind as I was aided with the help of therapists who worked with me for two months."

When she returned to school that spring quarter, she decided to take a full set of art courses to ease back into her studies. She received a full set of A's and then took on psychology classes that fall through an interdisciplinary program. Now, she is enrolled in a graduate course in Creative Art Therapy at Hofstra University.

She says this "strange experience" led her to find her place in the world, using her passion and person struggles to help others.

"It has been nothing but inspiring so far," she says. "I love it and I finally feel like I’m on the right path."  

She may even pursue a PhD in Art Therapy, she adds.

Diaz is not only mentally tough but she has the physical fortitude as well. For years she has been running with the NF Endurance Team, which raises funds for the Chilren's Tumor Foundation (CTF), serving as their volunteer team. 

"I wanted to be a part of something to cure NF," she says. "I really feel like I’m making a difference raising one dollar at a time."

She's already ran half marathons in Central Park and at the Long Island Festival of Races, where she crossed the finish line with blood covering her shirt after her noses started bleeding mid-race.  

After that experience, her mother advised her to scale back a bit and this year she will be running in the festival's 10K on May 1. She's been training at local parks to prepare for the event and working even harder to raise funds. As of April 22, she had collected just over $5,000 but still has a long way to go to reach her goal.

To get there she is asking the community for help. On April 23 she will be holding a car wash fundraiser in the parking lot of the T-Mobile store in West Hempstead located at 590 Hempstead Turnpike from 10:30 a.m. to 4 p.m. The cost per car is $5, which will be donated to the cause, as well as any proceeds from the sales of support bracelets.

'The manager was kind enough to let use of his lot free of charge including water," she says.

Those wishing contribute to her cause can also donate directly online through her secure Web site. 

As she tells herself all the time, "You never know what dollar the cure will be found with."

Diaz is optimistic that a cure will be found through the research that is being done with the money her team and the generous donors have raised.

 "I feel it will be found within 5 years," she says, explaining the early success she's seen so far with the drug she is currently receiving, Lapatinib, which outside of the clinical trial she is a part of is only approved for breast cancer treatment. "The drug has kept me stable with no growths and some tumor shrinkage already."

She says all these trials, studies and other research to find a cure or better treatments all need funding though.

"I want to have a healthy future and I know so many people battling NF or any illness for that matter and I want to see them lead a happy life," she says.

Diaz has lived less than a quarter of century so far but her life so far has given her wisdom beyond her years. 

"I see people take things for granted every day, especially their health," she says. "Striving to be happy and to have a meaningful life by helping others, following your dreams and being a part of something great is what I feel time on Earth should be spent doing."