Young Neurofibromatosis Survivor Fights, Fundraises For Others

LenaRose isn’t just your typical little girl … she’s a unicorn. She’s THAT girl. She’s the one who is unique, spirited, and giving.

Facing a battle that is little known about, LenaRose takes her Neurofibromatosis in stride as she continues to dance her way through life with confidence (She just made the competition team this year).

LenaRose has dealt with numerous eye issues since she was born. In 2016, she had surgery to have some scar tissue removed and the doctor recognized that her retina was bigger than it should be. That specialist suggested having LenaRose tested for Neurofibromatosis in August.

Her parents Derek (a marketing representative at Eric Ryan Corporation) and Jessica Smith awaited the results.

“It was a one in a million chance that she would have this, and turns out she did,” Derek said.

According to Derek, before they would do the bloodwork for the test LenaRose had to have an MRI. The MRI revealed that she did have a (non-cancerous) tumor on her brainstem. From there they ran the blood tests and it confirmed that LenaRose has Neurofibromatosis Type 2 (NF2).

LenaRose faces additional challenges that no child should ever face. Her hearing has also been affected. The Smiths have since found out that LenaRose has a tumor on her auditory nerve, and it is causing her to lose hearing in one ear. A common complication of NF2 which may lead to her losing her hearing completely one day.

“At this point we have to keep an eye on the tumors by having MRIs done every 3 months,” Derek said. Lena understands all of this, and she never complains or lets this get her down. She was relieved that she would still be able to participate in her dance class. Lena has become a pro at getting the MRIs, blood tests, etc.”

Despite her own challenges, LenaRose wanted to raise money for a charity related to Neurofibromatosis, so the Smiths did some research and found one that they felt inclined to support—The Littlest Tumor Foundation.

The Littlest Tumor Foundation is committed to the infinite possibility of forward-thinking Neurofibromatosis (NF) research. It supports, advocates, and educates about the Congressionally-Directed Medical Research Program (CDMRP) and the research conducted through the National Institutes of Health (NIH).

“We plan to work with this organization to spread awareness, obtain funding for research, and hopefully a cure,” Derek said. “Eric Ryan Corporation not only let her set up a stand to sell T-Shirts and Candy but also paid for the first $250 worth of shirts. Between this donation, her friends and dance family, and the amazing employees of ERC LenaRose has raised $1,375 so far for this organization.”

To learn more about The Littlest Tumor Foundation, please visit http://littlesttumor.org.