Fund raiser planned Saturday
for neurofibromatosis research
Posted 5/1/03

Editorıs note: This article was submited by Bob, Shirley and Jonathan Geurkink of Pease.

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May is "NF" Awareness month. NF is short for neurofibromatosis. One in 4,000 people are diagnosed with this disease. More people have NF than muscular dystrophy, Tay-Sachs and Huntington's disease combined.

Our son, Jonathan Geurkink, was diagnosed in 1984 with NF. There was very little information available about NF at that time. We were fortunate that our family doctors, Dahl and Gerstenkorn, knew of it so he was diagnosed correctly right away with Jonathan's first symptoms of cafe'-au-lait spots. In the next couple of years we searched for a neurologist who could help us.

When Jonathan was four years old, he had involuntary motions which we couldn't understand. After a couple failures with doctors we came in contact with a "family recommended² neurologist who seemed to understand NF. After six months of dealing with an involuntary motion, Jonathan got a headache that caused his body to shut down. Our neurologist suggested a MRI that showed a neurofibroma or a brain tumor off the hypothalamus in his brain. We checked in the hospital and had tests, two brain surgeries and were back home. Since there was not a NF doctor, we used the oncology department.

Jonathan had radiation, many more surgeries and chemo over the next ten years. Jonathan has medical problems because of NF and also side effects of brain surgeries and the neurofibroma in the center of his brain; therefore, each time we would get referred to another specialist. At times we were seeing over a dozen specialists between Children's Health Care in Minneapolis and Mayo Clinic. It was our job as parents to keep the communication going between the specialists to decide the best medical plan for Jonathan.

Our family and friends were and are great prayer warriors for us. We can testify to several miracles in Jonathan's life. He had surgeries where the surgeon would ask for prayers because he was concerned (worried) about the upcoming surgery. The chemo Jonathan had doesn't normally help stop the growth or shrink a neurofibroma, but we praise God it has stopped the growth for Jonathan's fibroma for now.

Jonathan has been told he would never have vision correction, but through referrals he has been blessed to see enough to do some reading although he is legally blind. We came to a time when all our specialists became "stumped" with some of Jonathan's medical symptoms and aggravations. We learned about a NF doctor in Chicago where we went for the first time a couple years ago and go to see him yearly.

Now Dr. Bobovic is at Mayo Clinic and working on research for NF. The NIH (National Institute of Health) is also working on studies for cures for NF. Our children are experiments as we try new medicine. We are very excited about the latest and the ongoing research for NF. We appreciate the support from our local communities. You are great and we hope you can continue to support us so we find a cure soon.

Jonathan, however, has been blessed in many ways and is a blessing to his family. He has a positive attitude on life and is currently attending the Minnesota Academy of the Blind in Faribault, Minn., and enjoying it.

Through rebuilding a NF support chapter in Minnesota, we now have a board and support group with several fund raisers every year to support research and make it possible to get our brochure (which the Minnesota chapter put together) out to the medical world and to people who are searching for answers about NF. Jonathan and his family are active in the annual golf tournament with its auction, "made in the shade" walk for NF, and in the "Weekenders USA" fashion shows. Jonathan's mom ( Shirley) is a Weekender's USA fashion coordinator and is having a show Saturday, May 3, at 10 a.m. in her home with all the profits going to NF research.

Thank you again for all your support financially for NF, your prayers over the years, and being there for us. We live in a great community.

Incidentally, our home is located four miles south of Milaca on Highway 169 on the east side of the highway, across from Commercial Auto Sales. It is the dark blue house with a green barn.