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Waynesboro family launches medical care fundraising campaign

Public Opinion (Chambersburg, PA) - 10/22/2014

Oct. 22--WAYNESBORO -- A Waynesboro family has launched a campaign to help send their daughter for advanced care in Tennessee.

At 4 days old, Arianna Venetta was diagnosed with tuberous sclerosis complex, a genetic disorder which causes non-malignant tumors to form in organs, impacting functions of the brain and causing seizures, developmental delay and autism. Doctors also discovered she had congenital heart defects.

Her condition was declared terminal.

Eleven years later, and against all odds, Arianna is participating in sports and the Special Olympics with support from her mother, Bridget, and younger sister, Lauren, 9.

Public Opinion wrote a story about her fight in April. Since then, however, her condition has gotten worse, Bridget said.

She's been experiencing more severe seizures, memory loss, mood instability because of tumors in the brain, migraines, enlarged kidney and back pain from cysts, she said.

"Right now, she's starting to go through puberty and hormones are changing, making things more difficult," Bridget said. "There's very little that regular doctors can do right now."

Even the multitude of doctors that normally take care of Arianna in Wilmington, Delaware don't know if there are any more options.

"We are now looking at a children's hospital in Memphis for medical treatment," Bridget said.

Doctors at LeBonheur Children's Hospital have told her that they believe they can shrink tumors in her body and kidneys and they believe they will need three initial visits to give Arianna an evaluation and treatment plan to set her up to receive medical care.

"I talked with these doctors and it was kind of like an 'aha' moment," Bridget said.

Bridget said she's been fortunate enough to get medical treatments covered by doctors and a good portion of the tests and found housing but the cost of transportation, food and medications loom.

The goal is to raise $5,000 to help with costs.

"I've tried everything and continue to try everything I can to get her the care she needs," she said.

A fundraiser at CiCi's Pizza in Hagerstown will be held Oct. 29 from 11 a.m. to 8 p.m. If diners mention the fundrasier, 10 percent of their bill will go to help her. Donations can also be made to Arianna's grandmother, Linda Stull, at PO Box 750 Waynesboro, PA 17268 and note the donation is for Arianna's Angels.

Donations can also be sent online at http://www.youcaring.com/medical-fundraiser/help-anna-get-to-tennessee-to-fight-tsc/246548.

To learn more about Arianna and her struggle with Tuberous Sclerosis Complex, visit her at www.facebook.com/AriannasAngels or you can read her history at www.caringbridge.org/pa/arianna

Lauren Cappuccio can be contacted at 262-4754.

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