by Marlys Kruger
By watching Aydin Bjork, a six-year-old kindergarten student at Colfax Elementary School, you might notice a slight limp when she moves through the hallways. But the limp, caused by a tumor in her ankle which stems from neurofibromatosis (NF), doesn’t seem to hold her back from many activities.
NF is a genetic disorder that is progressive and causes tumors to form in and around nerves, which can be anywhere in the body and may appear at any time. One in every 3,000-4,000 people in the U.S. are affected by it and although many cases are passed down from family members, 30-50 percent are a result of a spontaneous genetic mutation of unknown causes, which is what happened in Aydin’s case.
Aydin, the daughter of Kyle and Tasha Bjork of Colfax, went in for an annual medical checkup when she was three years old and it was discovered her right foot was bigger than her left foot. After a series of x-rays and an MRI, a tumor was discovered which led to some genetic testing. From those results, she was diagnosed with NF.
“There is no family history of NF in either my family or Kyle’s,” Tasha said. “It is just a fluke that Aydin ended up with it.”
There are three levels of NF and NF-1 appears in children and is usually non-cancerous. There is no cure or effective treatment and the tumors grow as the child grows. If the tumors grow too large and begin to push on nerves that would cause pain, surgery may be needed to remove part of them. But most people with the disorder have a normal life expectancy.
“Aydin has daily challenges but has learned that NF does not define who she is,” Tasha said. “In fact, it makes her a stronger person, inside and out. She is very happy-go-lucky and has a good attitude about life in general. She has lived with this medical problem for so long she doesn’t think twice about what she can or can’t do. Her teachers all say she is a joy to have in class and is a wonderful student. Physically, her right leg is longer than her left and her foot is very sensitive if she bumps it on something. But it doesn’t hold her back and she tries to do everything her classmates do,” she added.
Students at the school raised over $700 through a bake sale to donate to the “Great Steps 4 NF Walk” sponsored by WAXX radio. Tasha, along with family members and friends will be participating in the May 16th in Chippewa Falls. In addition, Aydin’s church, North Running Valley and other organizations have donated or pledged money to the NF foundation which has totaled around $3,000 so far.
“Anyone is welcome to walk with me in honor of all the boys, girls, men and women who are affected by NF every day,” Tasha said. “NF Midwest is the local regional non-profit that C.A.R.E.S (improves clinics, raises awareness, funds research, increases education, offers support) to help improve the lives of people with NF. Our school and community have been just great with donations and Aydin is very happy when she hears how much people want to help everyone with this disease,” she concluded.
You may register for the walk at www.GreatSteps.org but if you can’t make it, you can still donate through the website.