Renee - posted on 12/03/2009 ( 2 moms have responded )
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Almost 4 years ago now I went to court to get custody of my great-nephew. He has been abused in many ways that no child should have to go thru. each day I find out more and more of what his biological mom and her boyfriends did to him and it breaks my heart. He has Neurofibromatosis (tumors that can end up on or inside the body) He got this from his dad's side of the family. At age 5 shortly after I was awarded custody he had to undergo an operation to remove part of his right leg. His leg was so swollen with tumors and he also had them on the bottom of his foot. Even so he was a happy out going boy. He has to get prosetics at least every 3 months or so as he is growing. Resently I found out that the right leg is shrinking. This I'm told is NOT normal. On teh 1st of Dec. he went for a very lenghtly set of MRI's on his head where he also has tumors and on his spine which I pray they find no tumors. He gets constant headaches and I'm told his back hurts all the time because children with NF1 (for short) can have back problems and be mentally delayed as well as have trouble in school. HIs IQ is below that of other 7 1/2 year olds, and they say like his mom and due to the tumors from his dad that he also is mildly retarded (i hate that word) . He has found tumors on his body and gets sad when he finds one. I am at a loss as to what to do to help him get thru this, yet I compfort him the best I can..His motor skills are not good and he interputs things wrong. I worry about how this will affect him as a teen. For now I just take one day at a time and pray that God will heal him and all the other children out there with disorders. My son and I are Christian and that helps a lot. He knows that if God doesn't clear the tumors away that God has a reason. Maybe it's to help another child get thru the same thing or even a different problem. All in all he does what children do and sence losing part of his leg (below knee) he has acually been a much happier boy, it doesn't have all the pain he once had. If there are any mom's or dad's out there who are dealing with this same thing with your little ones I'd like to chat with you. I could use all the support and help I can get...Thank you..And God Bless you all with your little ones and may they be healed of what ever they too ae going thru..Amen
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