Thank you for visiting my fundraising page for Neurofibromatosis Midwest!

This is our 3rd year in participating in the Great Steps Naperville Riverwalk. We joined this walk 3 years ago after our 7 year old daughter Katelyne had been diagnosed with NF1. Her diagnosis did not come about because of symptoms she was having but because of the signs of NF she was showing. Even though I knew NF was a highly variable and progressive disorder that can cause a host of problems besides tumor growth I had felt a little comfort in knowing that Katelyne only showed the SIGNS not the SYMPTOMS of NF. But towards the end of last year that all changed. Katelyne is now being effected by NF and there is no comfort here.

Katelyne started getting frequent headache's last year and went to see a neurologist in December. She had her first MRI in January which showed she had an enlarged right optic nerve. This prompted a second MRI but this time just of her orbits. Although the enlarged tissue did not light up like a tumor we were told that because of the placement of the enlargement it looks more like a tumor or Optic Glioma than anything else. See optic tumor tissue resembles normal tissue and most of the times grows at a slow pace or not at all. Optic Glioma's are inoperatalbe but the majority of them never affect the vision or require treatment. Although that might sound like good news, our concern is still high because at Katelyne's recent visit to the ophthalmologist he found that her right eye is drifting when focusing. This did not present itself at her previous exam which was only 6 months prior to this exam. Is it coincident or is it the optic glioma? We don't know. What we do know is that the drifting is not being caused by poor vision and her headaches are just another symptom of NF.

What is next? Well Katelyne was put on preventative medication for her headaches. She will also be getting glasses which she is very excited about. For now she will need to visit the ophthalmologist every 3 months to watch for any other vision changes. In late August Katelyne will have another MRI of her orbits to see if the glioma is growing. After that it all depends on what the glioma is doing. And then we watch, wait and monitor, which is how life is lived when living with NF. Please pray with us that Katelyne's glioma is not growing and that her vision stays strong.

Researchers are saying that NF research will benefit approximately 175 million Americans. This includes 65 million people with cancer because 70% of cancers follow the same pathway as NF. 50 million people with heart disease, 35 million with learning disabilities, 25 million with memory loss and 30 thousand people with brain tumors will also benefit from NF research. Chances are someone you know will benefit from NF research so PLEASE consider making a donation today.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!