On Saturday Oct 1st there will be a NF Cure Walk for the Childrens Tumor Foundation In Salt Lake City.
First off I have to say I am horrible with words. so Hopefully I can put this all into words for you to understand.
I have suffered from
Neurofibromatosis for most my life. I was diagnosed with the NF type ! when I was just a couple months old. When I was about 6 I started to get migraines all the time would I would pass out from. It became routine for my friend in the neighborhood to have to run across the street to my house to get my parents because I had collapsed again! Doctors ran all sorts of brain scans and tests and nada. They couldn't find anything.
At this time I was also suffering from lots of ear aches and infections, so it was decided that I needed tubes put in my ear. It was during this surgery that it was discovered that I had a tumor growing on my cranial nerves. From here we went from doctor to doctor and test to test to see what could be done. all this while the tumor is growing like crazy. NF is a fairly common disorder. But the places where my tumors were located were uncommon. Doctors couldn't find anyone with the same growths as me, except for an older man in France.
By the are of 7 I wasnt given much hope of surviving. In fact i was given less than 6 months.
At one point I was hooked up to a morphine pain pump at all times. I had a feeding tube and a lot of the time I had to use a wheel chair or was basically bed ridden. I had a
Broviac Catheter that a nurse would come every few days to switch out the needle. One time she sneezed on the area and didn't clean well enough and I got a major staff infection that almost killed me and I had to be rushed into surgery to remove it and they replaced it with a central line.
One day, my pain pump malfunctioned giving me way more morphine than my body could handle. We were getting ready for a doctors appointment when I collapsed. My mom called 911 and when they got there they asked my mom if she even wanted them to work on me because I was basically already gone. While they were reading the machine to see the doses I had been getting, it turned out my doctor had been overdosing me on the morphine for a while. I had been taking daily doses that were more than to call a large horse. Even tho I did need it for the pain, I had been taking such large doses of it that I had become severely addicted to the drug and had to be taken off of it cold turkey (if any of you have ever tried to overcome an addiction, you know its hard, try doing it when you are only EIGHT).
After that my mom fired all doctors and had the feeding tube and central line removed. I'm now 24 and I've since then have seen specialist sparatically through out the years. But they all say the same thing. Nothing can be done. One doctor even took it to a convention where every other surgeon there agreed it would be to risky to operate. Id most likely die on the operation table, my air way is to obstructed so there is no way to intibate. Id have a seizure or bleed out. And even if they could operate the tumor is growing off important nerves, in order to get all of the tumor they would have to cut into the nerve, Id be paralyzed. Or if they missed any little piece of tumor it'd grow back large than it was before.
So I basically just have to live with this hope that they can someday find a cure. I probably won't be around long enough to see that happen, I know this. My last
MRI results weren't good. I try to live as normal of a life as possible, I just have to take extra cautions with everyting I do. I can't get bumped in the head or neck because the anyursms in neck could burst easily, quickly killing me. Little things like catching the flu become instantly life threatening. Last time I had the flu, I got so sick so fast and they couldn't find a pulse. They had told my parents I was dead.
Im not the only one that this has been hard on. My family has sacrificed so much for me because of this. We have moved numerous times, selling homes and vehicles to pay medical bills. My family has done with out vacations and extras because I was to sick or we could never afford it. My brothers weren't able to play on little league teams and had to give up lots of the extras that their friends had. This has affected them too.
NF is just as common as cancer. But at least with cancer there's a chance to be cured with chemo and radiation! With NF there is NO cure, even if a tumor can be removed, NF is still there, it never goes away. And for most NF patients having a tumor removed isn't an option.
If all I can do is help raise money so that someone else doesn't have to go through what my family and I have been through than at least I'm doing something to help. So please, come join in this walk. And if you can't please consider making a donation. Invite everyone you know to join the
facebook event I created and encourage them to make a donation. Even if you only make a one dollar donation its something! And it'd mean the world to me!
Click HERE to join my team or
HERE to make a donation to help find a cure for this horrible disease! Even just donating a dollar is doing something!
