What is Neurofibromatosis?

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Welcome.  I am going to spend a few minutes talking about Jamie’s disease.  Jamie has Neurofibromatosis Type 1.(www.nfinc.org) 

If you click on the link above you can read a lot of information about Neurofibromatosis Type 1 and Type 2 is there too.  There is way more information then I can write on here.  I am including a picture below of all the possible symptoms of NF.  Jamie has many of them.

  Jamie has the brain tumors (two at last count), learning disabilities, and macrocephaly.  He has a lot of the freckling.  He has very bad scoliosis that he has had to have rods in his back to correct at age 5.  He has many tumors in his body.  He has a large one that is wrapped around his trachea and his esophagus.  It is also wrapped around his left main stem (the tube that connects your trachea and your lungs together).  Right now the tube is compressing his airway and left main stem about 25% closed.  His surgeon says that he can’t remove it.  The last chat we had about removing it we were told that they couldn’t even remove half of it.  That if the day came that they would have to remove it or “let him go”…. he wasn’t sure what he would do because it was so big and so involved that he would be afraid that something would happen to him in the surgery.  So, I am not sure what will happen with that if the time comes. 

    Everyone always asks me what his prognosis is… the only thing I can say is what the doctor’s told us when we asked.  “We don’t know what is in the future for Jamie.  He shouldn’t still be here now.”  To me, that means that the sky is the limit. 

    Just last night Jamie was asking me when was he going to die.  He has asked me that several times and I always tell him the same thing… “If I have anything to do with it….a very long time from now”.  Then he wanted to know if he would be able to take care of himself one day.  I told him I thought that he would and I asked him why he was asking that.  He said that he wanted to know because he didn’t know what would happen to him after I died if he couldn’t take care of himself.  It just isn’t fair that an 11 year old would have to have such thoughts. 

    Anyway, here is another link about nf….  http://www.ctf.org/  Children’s Tumor Foundation.

    Also if you would like to help make children a little more happy… please check out Make A Child Smile @  http://www.makeachildsmile.org/   Send a card to three different children each month.  Sheets of stickers or those temporary tattoos are a big hit in the cards.  Jamie was featured in April 2001.  You can view his time @ http://www.makeachildsmile.org/2001/prev_2001_apr.shtml     You can also check out the Angels section.  Unfortunately not all of the children featured are still with us.  Matter of fact, because of the process to get a child featured, some of the children haven’t even made it long enough to be featured.  I think it is just the saddest thing to have so many sick children.  Take a few minutes if you can and check out these wonderful, brave children. 

ok   enough for now.  I will let you go and enjoy your day.  Have a great day and a GREAT NEW YEAR!!!

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