When I was first told about NF was in the ER of a Childrens Hospital at 11:20 PM, I thought she had broken her arm.... what she had was a tumor the size of a soft ball sitting by her heart blocking her one artery making her heart work harder. We had to wait 3 days to get her into another Hospital that COULD do the surgery. That's when I learned she had NF and after I was examined and I mean examined it was determined I had the NF gene. Gee, live with that.... you gave your kid NF. Don't worry I got over the fault thing. Took awhile. The Dr gave me a script for tylenol with codiene. Then he told me she had a year to live. I fired him on the spot. We have already been to two hospital when I take her to a third. They tell me NF is NOT life threaten and not to worry about it. (But you do, it's always in the back of your head.) They tell me that she might quilify for a treatment program. I'd have to go to another hospital. I went to another hospital and stayed there for a long time. In my spare time...like when i was supposed to sleep I'd read up on Neurofibromatosis. And That's when I realized that someone was not being 100% truthful. NF was life threaten. My G could die. And she will after battling NF for almost 16 years. Along with Mark Hull, Patrick Walsh, Delaney and so many more that it's impossible to list them. I don't get a cent of this. It goes straight to CTF. There is no cure for NF, nothing to "slow the tumor growth down". We try chemo, radiation, and "snake oil" to cure us. The tumor's are unbearable. They can itch so bad you dig until you bleed, you can. They tumors can also hurt so bad no amount of pain med's the Dr has given you works. You feel like screaming but what would that do. NF needs a cure. Mother's are tired of buring there babies.
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