The day before my daughters first birthday we (my wife and I) were called into the pediatricians office after an MRI. I wish that there was an easy way to tell you this but the conclusion of the MRI Is your son has NF1 Neurofibromatosis type 1 with a 9mm lesion at the back of his brain near base of his scull, and numerous fibroid said the pediatrician. Neuro what I said but I could not breath heart was pounding although I wasn't sure about the disease yet I did know that a lesion was a bad thing to have in the brain.
Now as time went on some research and talking to Doctors, Neurofibromatosis is refer to as NF there are two types NF1 and NF2. NF1 is a disease that can cause enlargement and deformation of bones and curvatures of the spine can happen. this disease can affect nerves everywhere in the body and can at times develop tumors in the brain, on cranial nerves or on the spinal cord. NF1 is also called Von Recklinghausen.
type 2 has loss of hearing from tumors on the hearing nerve skin disorders and abnormalities, Brain tumors, and spinal.
There is a 3rd type of this disease called Shwannomatosis its little known but seems to have a small combo of both types of NF
Now imagine being that father being told this I wanted to die it ripped the heart and soul out of me but I had to and still try to remain the tough guy, my wife was a mess and to be frank she still is. Because people with this disease are more pronned to neurological disorders we found out that he ended up with hydrocephalus which took 3 brain surgeries to get it under control in 1 year. Aside from this there is the fact that they have a 50/50 Chance that's 1out of every2 chance of passing on the gene and not sure how true it is because no-one will give me a straight answer but I heard that if he marries a girl with the disease and has a child there is a very high risk of birth defects and down syndrome etc.etc. How am I as a father going to look my son straight faced in the eye and tell him this its eating me alive. I'm hard on him because I don't want him to use it as a crutch in life but at the same time I feel like a dirt bag he has every right to use it as a crutch. I hope that no- one ever has to go through this ever the constant worries of possible seizure's will a tumour grow is his body going to get all bumpy will anyone Love him if he does I WILL.
You know when things like this happen you blame your self and being that its primarily genetic you really blame yourself they wont test us because we are not having more kids. Through the whole ordeal we have never lied to him and he goes to MRI after MRI and blood test after blood test and specialist to specialist and he is the bravest kid Ive ever known he must be like his mom because I'm a wimp. At time he asks questions like why do I have spots on me? am I normal? and again I say again its killing me slowly from the inside out. How? Why? I once got so emotional like right now, that I said to Him Nick Please remember one thing if ever you want to hate or blame someone for this don't blame your Mom its not her fault she loves you Blame me I love you with all my heart but blame me. YOU KNOW WHAT THIS 6 NOW 7 YEAR OLD SAID TO ME DAD ITS NOT YOU FAULT ITS NO_ONES FAULT GOD MADE ME SPECIAL. If I'm Lying I'm dying, AND how true that is you truly are a special gift from god to us and anyone who has had the honour to meet you always say the same thing You May Have NF1 But NF1 has got nothing on you baby boy.
In ending this blog I strongly urge you to please sign the petition I did not go in to great detail about the disease but look it up google it look at some pictures join the facebook group Neurofibromatosis and read what some of the people affected with this disease are going through and don't sign it just for me or because you feel you have to.Do it because like me either you never ever heard of this disease and awareness needs to be brought to this or maybe just because its a good cause. I thank you Nicholas thanks you and everyone affected with this condition thanks you
Whew. It's been a WHILE!
1 month ago