Learning to live with neurofibromatosis

Neurofibromatosis — a long word unknown to most people. It does have a certain rhythm when typing it — neuro-fibro-mato-sis.

This disease is described as one of the most common inherited neurological disease affecting about one in every 3,000 people. It primarily affects the nervous system, skin and eyes. Symptoms of neurofibromatosis are usually identified before children are 10 years old.

Neurofibromatosis is a household word in the home of John and Jane Beranek, Columbia Falls. Their daughter Jenny and son John (Butch) were diagnosed with the disease at Shriner’s Hospital in Spokane. Jenny was four years old and Butch was two years old.

Jenny, 38, is the wife of Mark Morgan. Butch, 36, who lives in South Carolina, is unmarried, Jenny has been hospitalized in Harbor View Hospital, Seattle, through the years. Prognosis is to observe a tumor unable to be removed during other surgeries and would require further surgery. The Morgans are parents of two daughters, Jozlyn, active 12 year old, and Jazmyn, 10 years old.

Jazmyn has been a frequent patient in Children’s Hospital, Seattle, since diagnosed with neurofibromatosis when three years old. Surgery, chemo and being away from home have been all too familiar to the youngster throughout her lifetime. Jazmyn has been unable to attend school since second grade and cannot attend when on chemotherapy.

Jazmyn’s neurofibromas (tumors) are being monitored. They are inoperable as in her brain and on her optical nerves.

There is no treatment or cure, but surgery can remove tumors and correct malformed bones. Tumors can become cancerous in a very small number of cases. These can be treated with radiation or chemotherapy to kill cancer cells.

The family is grateful to the community, friends, family and area businesses for supporting a spaghetti and meatball dinner and silent auction. Almost $3,000 was raised at the Nov. 17 event.

Businesses donating were Gislason Chiropractic, Montana Coffee Traders, Northwest Hobbies, Culligan, Murdoch’s, Laurie’s Deli, Western Building Centers, Base Camp Cafe, Nite Owl Restaurant, A & W, Pizza Hut, Super 1 Foods, Famous Dave’s, Insty Prints for posters, radio stations for advertising and North Valley Senior Center, where benefit was held. Brian and Donna Hartnett were thanked for making delicious meat balls.

Jane and John grew up in Columbia Falls. She is the daughter of Lois and the late Wesley (Shorty) Beach. John’s parents, both deceased, were Anton and Martha (Spinler) Beranek. Mark’s parents are Marshall and Bev Morgan in Nebraska.

Gladys Shay is a longtime resident and columnist for the Hungry Horse News.