Hello my fellow NFer’s,
My name is Kathy Rasmus some know me as ladystaraz, STAR 1 I am 49 and have NF1. I am married to a wonderful man for 10 years this October 5th we have been together for 12 years. He has a wonderful plan to help NF research but I need to explain some history on him first.
My husband is disabled and has many health issues he has been having to deal with over the last 4 years.
2008 Had a cancerous tumor removed from his parotid gland (it is a salivary gland in the face), 3 days later he suffered a massive pulmonary embolism and a pulmonary infarction. Now is on Coumadin and will be for the rest of his life, gets his blood tested every 2-3 weeks to test his INR.
2008 Diagnosed with spinal stenosis, bulging discs, pinched nerves, lenier tears.
He is being followed by doctors for the above conditions
2011 August had a partial knee replacement, during the surgery the doctor broke his femur bone and did not tell us, took us 4 weeks 3 ER visits to find this out. Once we confronted him he laughed and said yea…. I accidentally broke it. When we asked him when/how this was going to be fixed he said that is in much too tricky area. All this going through intense physical therapy for the knee. His PT wrote a firm letter to the doctor and he finally agreed to fix it another 6 weeks later in November. The wound got seriously infected and he went through 6 weeks of treatment with a wound care doctor to prepare for yet another surgery in January. He finally made it through all the surgeries and now is getting back on track to his PT.
2012 March he has been suffering from severe headaches, black out moments and most recently seizures. He has had an ongoing migraine headache now for 4 weeks.
2012 April we had a trip to the ER for his headache and a black out moment w/seizure – he has been diagnosed with epilepsy. 1 week before this he had a MRA of his head and neck. During his hospital stay for the epilepsy we did not have the results from the MRA. The MRA discovered he has a blocked carotid artery which we believe is causing his blank moments. Now the hospital never addressed the headache only the seizures. Several doctor appointments pending
Now to my point. With all his medical conditions my husband feels he has no purpose in life and wants to make a difference. He wants to raise money for NF. His plan is to walk from our home in Peoria Arizona to Prescott Arizona going up the back way which is about 110 miles. With all of his health conditions he feels this will help him feel useful.
We need help finding how to get sponsors for this. He says he could raise the money for one of the foundations of his conditions, he wants to do something for NF. He says not enough people know about NF, more research needs to be done finding a cure. He wants to try and make a difference. He knows about the PF Chang Rock-n-Roll Marathon, the Breast cancer walk that groups of people do he feels no one person has done something like this alone.
He is angry that insurance companies don’t want to pay for removals of tumors because it is cosmetic, that SSI says it is not a disability that we have to fight doctors to remove tumors because they grow back. You know the drill.
His plan to start his walk is May 2nd before it starts getting to hot, feels it will take him 3-4 days to complete.
If anybody has idea on how to go about finding sponsors, also and understand that 100% of any money collected will go to NF research. He also is willing to have a 3rd party to collect and or hold the monies sponsored so anybody that wants to help will have the comfort knowing that the money will actually go to where it is supposed to go.
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Contacted CTF that runs this website and they helped me get a website put up, Please take a look at our website