We would like to tell you our story:
Our Son Duane Ray was born perfectly normal, at least that was the indication until his body starting showing cafe' O lae spots within two weeks of birth. These are coffee colored spots that show as time goes on in numbers along with different sizes. At two weeks of age he was seen for his check up and the doctor we had seen said after seeing the cafe' O lae spots, "He won't live a long life", "he has Neurofibromatosis Disorder". The doctor then left the room, with me standing there holding my baby, jaw open and on the verge of crying. What, my son won't live a long life? I couldn't get that out of my mind. I thought the doctor made a terrible mistake. As the next couple of years passed, I noticed that Duane's chest on the left side was sticking our further then the right. I took him to his pediatrician in Reno Nevada and had him checked. His doctor said that we needed to get Duane to the Children's Hospital in San Fransico, California. There possibly could be a tumor growing in between the heart wall and rib cage. Oh no, here it starts and he is just about 3 years old. It turns out the his skeleton system on the left was growing faster then the right side and that the right side will catch up, for us not to worry. The doctors in SF were very nice and of course knowledgeable and helped us in getting started with a 6 month program for Duane to be checked by his doctor and a children's neurologist. He went every 6 months then to once a year. He had been seen by the genetic department as well, noting, having spots on the eyes, however, it isn't plain to see by others, and didn't affect Duane's sight.
Through the next few years including puberty, Duane did very well. He was tested using an MRI xray and die, due to hearing loss to see if there was a tumor growing on the nerve. The MRI was negative for a growth, but he has hearing loss.
The skin tumors continued growing and the cafe' O lae spots increased in amount and various sizes all over his body.
Just this summer 6/2009, he had a large tumor removed off the top of his right foot. It was not cancerous, thank God. The nerve to the top of his foot had to be cut and now there isn't a feeling there at all.
Some of the growths that I have seen on Duane are soft fleshy tumors with what seems to be liquid inside. Different shape and sizes also. Some in very difficult areas that hurt him, such asa under the belt to name an area.
He had been to a Neurologist through Kaiser, and had another MRI done due to sever headaches that were just starting up. The MRI found a white image (growth) about 7mm in size on the right side of his brain. However, the Neurologist, (I won't mentioned names) said to wait 6 months before we really should worry and do another MRI at that time to see if it has grown. 6 Months, are you crazy doctor.
This past September at the age of 35, Duane experienced his first seizure. He called into work and let them know that he couldn't work that specific day, due to his job (Truck Driver) and the employer said "you find someone to work your shift or you don't come back to work". Guess what? He lost his job. You can not drive with possible seizures and clasping behind the wheel of a truck. Safety has always been Duane's primary concern. I won't mention names here either, but his employer denied everything...
The seizures were getting more frequent and since Duane lost his job, that also meant he lost his health insurance with Kaiser.
I came down from Wyoming to California to help my Son get health care and financial assistance. We worked hard for two weeks. The paper work was astronomical, let alone the time to do it and the people to see. Wow. I wish there were more help out there for the people who really need the assistance, not the wanna be. (fakers who don't need the help but take advantage of the programs). In the mean time we (his girlfriend Jessica and I ) had taken Duane to UC Davis in Sacramento. Folk's, I was so upset I was yelling at a female Doctor out side the hospital after waiting 7 hours, yes 7 hours in the emergency room waiting for help for my Son. She kept apologizing to me, but that didn't help. Yes, I went up to the nurses desk several times reminding them of Duane. "Just a little longer" they said. I was hoping that we could get Duane seen for his terrible headaches, now remember he has this 7mm spot on his brain. Bottom line, he didn't get seen. "Thank You" UC Davis of Sacramento.
By the time I left to head back home, Duane was getting health assistance from the State of California, which he needed very much so. He has a wonderful Doctor and she is constantly in contact with him. He is on seizure medication, antidepressants, and pain medication for the headaches. He is not driving any type of vehicles, he has lost his driving career.
For a mother to see her Son so strong and healthy turn into a very thin, sick, young man; well, for those of you who have been through similar cases you understand. I feel so responsible and yet I can't do a thing to help his condition. But...I am there for my Son, Duane.
Duane told us that his DREAMS have now become REALITY.
I LOVE YOU SON SO VERY MUCH, YOUR ARE MY HERO!
(I love you Man!)
I have not listed all that Duane has gone through with NF. I wanted to keep the story short enough but yet have you understand some of the problems that affect people with NF.
Thank you for your time Folks.
