By Cherri Gregg
WILLIAMSTOWN, N.J. (CBS) — At seven years old, Ella Wilson is a bubbly, vivacious second grader.
“My favorite color is pink,” she says, laughing. “You can tell by my kitchen and my dress and my headband.”
If she didn’t tell you, it’d be hard to guess that the Williamstown, NJ girl was diagnosed in 2011 with type 1 neurofibromatosis, or NF1, a genetic neurological disorder in which nerve tissue grows tumors throughout the body.
“She’s susceptible to cancers, behavioral issues, low muscle tone and poor coordination, vision loss,” says Terri Wilson, Ella’s mom. “Some get scoliosis [spinal curvature], some get bumps all over their bodies, some are disfigured.”
Terri, who runs a summer camp for kids and adults with special needs, says that while the symptoms of NF are frightening, Ella smiles, laughs, and sings a lot.
Ella recently began a second round of chemotherapy to stop the growth of tumors in her brain. Her hair sheds heavily, and she wears glasses and carries a white cane since tumors in her eyes impair her vision.
But none of that seems to bother Ella, who instead focuses her attention on winning at Candyland and on helping others kids with NF.
“She raised $10,000 for CHOP (Children’s Hospital of Philadelphia) for NF research, she did a Disney Friends For Change grant event,” says Terri. “A lot of people came out and volunteered for the day to make hats and headbands for kids that have cancer. These are all her ideas.”
The Wilson family started a Facebook page called, “Hope for Ella” last year. In less than ten months the site has picked up roughly 3,500 “likes” from people all over the world. The family uses the site to get the word out about fundraisers and events, such as the one they’re throwing this December: a holiday party for kids.
“I want to be an elf because I’m kind of silly,” says Ella, who plans to wear green. “I want to hand out treats. We’ll have a deejay. Santa will be there!”
In addition to being the life of the party, Ella is also a budding songstress. She sang two songs during her interview with KYW Newsradio, one by Hannah Montana and the other an original: a call-and-response song titled, “Hope for Ella.”
“Everywhere we go, we want the world to know, we’re fighting for a cure,” sang Ella, “So ,NF no more, so we tell them we’re from Hope for Ella — mighty, mighty Ella!”
The Wilsons say the vision for Hope for Ella goes far beyond Facebook. Terri says the family is in the process of starting a nonprofit organization to help raise more money for research. Ella says she approves.
“I want the world to know we are fighting for a cure,” says Ella. “I want kids like me to feel like they need to be a part of this world and that they have a voice that needs to be heard.”
For more on Hope for Ella, go to https://www.facebook.com/HopeForElla.
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