Nf2 and Lew

Lewis is a 14 year old boy with a condition called neurofibromatosis type 2. This disease grows tumours throughout the central nervous system and in the brain And symptoms vary according to their growth location. Lewis has 12 tumours at the moment, one of them being on his 3rd cranial nerve, in the cavernous sinus area and attached to the carotid artery which makes it totally inoperable. Lewis is blind in one eye and has complete ptosis of his right eyelid, he also has mononeuropathy of his right foot and left hand, muscle wasting of right leg and left arm and a number of other complications. His mobility and hearing is also affected and an MRI scan has shown an increase in size on the hearing nerve tumours. Lewis has recently had a course of proton therapy in America to treat one of the brain tumours that has grown around the carotid atery, without this he would lose the vision in his other eye or even suffer more serious complications, such as a stroke. Just recently Lewis has been diagnosed with a large sciatic nerve tumour. This tumour is inoperable according to the doctors in the UK. However if it is not treated with something he will lose the function of his bowel, bladder and right leg. We have contacted the proton therapy institute in America and they have treated this type of tumour But not with anyone with Nf2. This disease has no cure and we find ourselves in a position of only have a limited number of options available treatment wise. both of which have potentially serious sideneffects. We as parents are trying to raise enough money to take him the follow up appointments relating to the proton therapy radiation treatment in Jacksonville AmericA that he recieved earlier in the year. this disease is progressive and degenerative and If you can find it within your heart to help lewis have a better quality of life we as parents would be forever grateful no matter how small. Thankyou for your all your support.