‘She doesn’t hold back’Like other teens, Ariahna Edwards just wants to fit in. Because of a genetic disease she’s had since birth; however, there are things she can’t do.
By: Maria Lockwood, Superior Telegram
Like other teens, Ariahna Edwards just wants to fit in. Because of a genetic disease she’s had since birth; however, there are things she can’t do.
“She’s never going to be able to wear high heels,” said her great-aunt, Mary McDonald. Tumors she’s developed as a result of neurofibromatosis has forced Ariahna to wear tennis shoes since she was 6. And she lives with discomfort.
“It’s always been painful, that’s just part of the disease,” said MacDonald, who lives in Gordon.
The growing tumors on Ariahna’s feet have hobbled her, preventing her from running and making even walking difficult. They didn’t stop her from attending prom at her South Dakota high school this spring, though.
“She doesn’t hold back,” MacDonald said. “She tried out for cheerleading.” But the 16-year-old, who loves to read and write stories, didn’t make the team.
“She’s just a precious girl,” MacDonald said. “She’s just had to put up with so much in her life.”
And, said her husband, Doug, “she never complains.”
Recently, the teen underwent surgery to remove large tumors from four areas – her lip, left leg and both feet. Ariahna’s family and friends are holding a silent auction benefit complete with coneys, walking tacos, baked goods and more to help cover medical expenses. It runs 4:30-7:30 p.m. Friday at Bayside Baptist Church.
While the family’s health insurance covered most of the hospital stay, it did not pay for the surgeon’s fees. Dr. McKay McKinnon, who removed the tumors, is considered a plastic surgeon, the MacDonalds said.
Ariahna is even expected to attend Friday’s event. The teen lived in Superior for years and attended Maranatha Academy.
Many family members still live in the area, including her grandmother, Patty Helfenstein, and great-grandmother Mary Lou Reid.
“We’re all committed to do what it takes to help her,” said Mary MacDonald.
Neurofibromatosis causes tumors to grow in the nervous system. It’s a progressive disorder, with most symptoms worsening with time. New tumors can start at any time and they can become cancerous.
Ariahna’s largest tumors, including one that nearly engulfed her right foot, had become unmanageable, Doug MacDonald said. Seeing the tumors on her feet wiggle like Jell-O when she walked was, he said, heartbreaking. He and his wife learned about Dr. McKinnon through a program on the Health Channel last fall. The Chicago-based surgeon had successfully removed large tumors from many patients, including a Michigan woman who was practically engulfed by a 200-pound tumor.
McKinnon removed the tumors from Ariahna on June 29, and the teen was released to return home last Friday.
There is no cure for neurofibromatosis, but the family has rallied to support Ariahna.
“We’d do anything to save her,” Mary MacDonald said.
In addition to the Friday event, benefit fund has also been set up at Superior Choice Credit Union, the Ariahna Edwards Surgery Fund Benefit.
For information, contact Helfenstein at (715) 395-9102 or the MacDonalds at (218) 590-5000.