Hard to say?~~~Try living with it!
This page is a tribute to the trials and triumphs of those suffering with Neurofibromatosis. This is defined by the National Neurofibromatosis as a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. It also leads to developmental abnormalities. For example, individuals with NF have a higher incidence of learning disabilities. If you have a link for this page or would like more information on this subject, please feel free to email mehere.
My name is Debbie. I am happily married and have 2 children. My daughter Steffanie is 15 and my son JJ is 11. JJ and I both have NF. I am a Paraprofessional Aide in our local school district. I am currently working in the Autistic Pre-School program in our school district.I just recently started working outside the home after 11 years of being a daycare provider.Some of my hobbies include reading, cooking, walking, bike riding and of course the internet. I belong to a NF support group. There I have met some of the most wonderful people. I have also met a bunch of loopy ladies and a gent who have turned out to be some of the best friends I have ever had. I can't forget to mention Shal & Brooklyn. Thanks for being here whenever I need a shoulder to lean on. Those of you that I'm talking about know who you are.
My daughter is in the 9th grade. She is an A student and in the honors classes. She hopes to be on Broadway someday. She takes weekly voice lessons and is involved in the community theater. She really enjoys singing. She sang the National Anthem from the announcers tower before every home football game the past 2 seasons. She was also a flag cheerleader coach. She's a busy little girl between school work and all her extra activities.+
*UPDATE BELOW* My son JJ is in third grade. He has NF1. He has several cafe au lait spots and a few "bumps". He was diagnosed 3 years ago with an Optic Glioma. This is a brain tumor on the optic nerve. There is no easy treatment for this. Because it's not affecting his vision right now, the safest thing to do is leave it alone. He will be going in for MRI's once a year and seeing his neurological opthamologist to watch it. If it starts to grow or if there is any change in his vision he will begin chemotherapy immediately. He also has some learning disabilities, fine motor and speech delays. When he was younger he also had large motor delays. With alot of hard work and determanation on his part he has finally caught up physically to children his own age. This was an exciting accomplisment for him. His self esteem is still a bit low but he's doing much better and interacting with the neighborhood children more often now. He was involved in Martial Arts for 3 years. He was was a 4th gup which is a green belt with 2 stripes. He stopped Karate for a while to give football a try. He loves playing football.He is the center on the 1st string offense squad. It's tough for him at times keeping up with all the other kids, but he gives it his all. Karate and dance have helped with his balance, coordination and self esteem. This year in school he has been mainstreamed with help as needed from a classroom aide. He gets speech therapy once a week and will be starting occupational therapy again soon. He still has alot of trouble with fine motor skills. If all goes as planned the OT teacher will be helping him learn how to use an alpha smart. The alpha smart will allow him to type from a small keyboard at his desk when his hand gets too tired or sore from writting.We are so proud of the growth and accomplishments he has made the past year.
*UPDATE 11/05* JJ started his 4th grade year in a new school. He had to change due to our town's redistricting. He is mainstreamed with the help from an aide in Science. She helps him with note taking and writing longer assignments. It was a rough begining for him adjusting to his new school. He is finally happier there now. His class elected him to be Student Council class rep. He goes to meeting once a month and reports back to his class. His football season is coming to an end. He is still the center on the first string team. His team is awesome this year. They finished their regular season with an 8-0-0 record including 5 shutouts and became division champs. They went on to the play offs and became "runners up" for the conference championship. From there it was on to the Garden State games where sadly they lost the first game. Over all their record was 11-2. Not bad :-)We still have another game or 2 coming up. He started wrestling practice this week. It's the first year he has asked to join. He says he likes it so far. We'll see how it goes. Healthwise he is doing okay. He will be having a tumor removed from his left hand next month. It's causing him alot of pain. He says the pain shoots up to his elbow and makes his fingers tingle. He wanted to wait until football was over to have the surgery. We had a scare a few months ago.He started complaining more frequently about headaches and blurry vision. I was worried that the optic glioma had grown since those are the first 2 signs that it has. Fortunatly it turned out he simply needed glasses just like any other normal kid. You can read more about all that at JJ's other page at Caring Bridge. E-mail me for the link if you don't have it.
*UPDATE* 2/2007 JJ is in the 5th grade now. He enjoyed football this year where he was once again the starting center. They had a great season! We decided not to remove his tumor last year. When we went for the MRI to see where it was we discovered that he ad not 1 but 7 tumors in his hand. We are not sure which one or how many are causing the pain. He tried wrestling again but decided to quit after a few practices. The wrestling was too painful for him because of the 7 tumors in his had and 2 in his arm.He is doing well in school this year. It's the first year that he does not recieve help from a paraprofessional aide. There have been no changes to his optic glioma! This is great news for us. He still gets severe headaches that seem to come out of nowhere. He's a tough kid and handles his pain as well as he can.
As I mentioned before I also have NF. I was diagnosed officially at 13. My Mother knew when I was a few months old that something was different about me. I was covered with light colored birthmarks. At 13 I had a large plexiform neuroma removed from my left side. The tumor that was removed has been slowly growing back the last few years. Unfortunately fibromas do tend to grow back. I have a tumor on in the left side of my neck which causes pain down my arm and across the back of my neck. This tumor is in the same place as the one I had removed 3 years ago. Recent scans have shown tumors in my lungs. The Dr said he is confident they are from the NF so we are just watching them for now. I also have a tumor in my right thigh. It doesn't bother me all that much.
I had a real rough time all through school. Back then not many people had even heard about NF. Today it's much easier for our children since it's been proven that there's a link between NF and learning disabilities. Life with NF can be difficult.
I met my husband when I was 19. I have to say, I fell in love with him the first time I saw him. On our 2nd date I knew he would be the one I married. He made me feel like the most beautiful person inside and out. I had never felt that way before. I grew up being ashamed and embarrased by my tumors and birthmarks. On our very first date I laid it all on the line for him. I told him everything. I even pulled up my shirt to show him the tumors on my belly. He looked right at me and said "Do you think I care about how you look? You could never be ugly to me."
A few weeks later we had another long talk about NF. I explained to him how it would get worse. He told me he wanted to be with me for the rest of our lives, and together we would get through anything. He has been true to his words for 15 years now. With my husband by my side I finally learned to be proud of who I am. For every negative thing I would say about myself, he would point out something good. I am no longer afraid to tell people about NF. I am who I am and I like who I am. Click below on my links to learn more about NF. I also posted some links of my fellow NF'rs.
Click the link below to Karen's Korner to view a very special page about a little girl named Karen. Karen passed away at the age of 10 due to complications of NF.
This Neurofibromatosis Webring
owned by My NF Page.
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