Warsaw Mother, Daughter To Participate In Neurofibromatosis Walk

July 28, 2016 at 4:25 p.m.

By Jennifer [email protected]

Sierra Scaife was diagnosed with neurofibromatosis in December 2009 at Parkview Hospital, Fort Wayne, at age 14.

Scaife has lost sight in her right eye as a result of the disease.

“Losing her eyesight was progressive and we think the neurofibromatosis took over, causing her to lose her eyesight in her one eye,” Lynn Butts, Scaife’s mother, said.

Scaife was 13 when she began losing her eyesight in her right eye.

She said despite not having eyesight in her right eye, she hopes to be able to drive one day.

“When she was little she complained of her legs and arms hurting, and we thought it was growing pains. Then the doctors ran tests and she was diagnosed with neurofibromatosis,” Butts, said.

There were tests run and the tests came back positive for neurofibromatosis.

Neurofibromatosis is a highly variable and progressive genetic disorder that can cause tumors to grow on the nerves. It affects approximately one in 2,500 births.

Scaife, 16, will be a sophomore at Warsaw Community High School.

She has undergone physical therapy at Kosciusko Community Hospital that will continue.

Scaife has pain in her arms and legs, and the physical therapy will help that.

She goes to Riley Hospital for Children once a year for neurology care.

NF Midwest, a non-profit organization in Saint Charles, Ill., is having a walk called Great Steps For NF Sept. 10 at 10 a.m. at Carroll High School, Fort Wayne. Funds are raised for neurofibromatosis research.

Scaife and her mother are interested in knowing if other people in Kosciusko County have neurofibromatosis and are encouraging them to take part in the walk.

To learn more about the walk, visit www.greatsteps.org, or if interested in being on Scaife’s and Butts’ team, call Butts at 574-306-1237.[[In-content Ad]]

Sierra Scaife was diagnosed with neurofibromatosis in December 2009 at Parkview Hospital, Fort Wayne, at age 14.

Scaife has lost sight in her right eye as a result of the disease.

“Losing her eyesight was progressive and we think the neurofibromatosis took over, causing her to lose her eyesight in her one eye,” Lynn Butts, Scaife’s mother, said.

Scaife was 13 when she began losing her eyesight in her right eye.

She said despite not having eyesight in her right eye, she hopes to be able to drive one day.

“When she was little she complained of her legs and arms hurting, and we thought it was growing pains. Then the doctors ran tests and she was diagnosed with neurofibromatosis,” Butts, said.

There were tests run and the tests came back positive for neurofibromatosis.

Neurofibromatosis is a highly variable and progressive genetic disorder that can cause tumors to grow on the nerves. It affects approximately one in 2,500 births.

Scaife, 16, will be a sophomore at Warsaw Community High School.

She has undergone physical therapy at Kosciusko Community Hospital that will continue.

Scaife has pain in her arms and legs, and the physical therapy will help that.

She goes to Riley Hospital for Children once a year for neurology care.

NF Midwest, a non-profit organization in Saint Charles, Ill., is having a walk called Great Steps For NF Sept. 10 at 10 a.m. at Carroll High School, Fort Wayne. Funds are raised for neurofibromatosis research.

Scaife and her mother are interested in knowing if other people in Kosciusko County have neurofibromatosis and are encouraging them to take part in the walk.

To learn more about the walk, visit www.greatsteps.org, or if interested in being on Scaife’s and Butts’ team, call Butts at 574-306-1237.[[In-content Ad]]
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