After an uneventful pregnancy and uncomplicated birth - BIll and I were blessed with this beautiful little blond girl. Elizabeth was an easy baby, very happy and contented and (except for not sleeping) life was wonderful. Things began to change for Elizabeth, however,and our lives have never been the same since. At age 2½ Elizabeth was diagnosed with severe autism. We were crushed, but not defeated. I went and took courses to learn about this condition, gave up my career and stayed home to ensure all therapies necessary for our precious daughter to learn were in place. For the next 1½ years we ate, slept and breathed autism.
Just when we thought things were under control - at age 4¼, Elizabeth was diagnosed with NF1. The doctors explained that she could have been diagnosed at birth - since she had café-au-lait spots and a tumor for as long as we could remember. We were given a short write-up about the condition and referred for an MRI. We did not initially panic about the thought of another condition since she had been like this since birth. We did however make the decision to not have any more children.
Soon after we noticed a second tumor. Now we were scared. We got through our MRI and eye test and dermatology without any other major complications (except to learn that there was a tumor forming deep inside her left cheek). We continued to watch for anything new that might happen. For a while nothing else happened and autism again became the biggest priority of Elizabeth's life. One night though, after her bath, Bill noticed that Elizabeth seemed to have almost transparent bumps all over the base of her back. Over the next few months, as we watched in horror, these bumps became more apparent and began appearing other places. Now we were very scared. Since that time we have seen quite a few more of these subcutaneous tumors develop on her torso, arms and legs.. She has also developed a tremendous amount of skin fold frecking. The freckling is not dangerous, but it is very noticeable to others.
Desperate for further information, I got a new computer with internet access and began trying to educate myself about neurofibromatosis. I spent a lot of time reading on the NNFF bulletin board,( now CTF ). Here were real parents, living the same life we now were, talking in language I could understand, asking and answering many questions I also had.
In April 2002, I attended my first NFSO meeting. I ended up having breakfast with Rhonda Nasby and Margaret Muise. They were so welcoming and accepting of me that I instantly knew I was among friends, although I was a little overwhelmed seeing and hearing the realities of what NF can do to people. I was only able to stay for part of the meeting - but did meet many other very friendly people. I left with my May tea party supplies and ran my own mini awareness campaign, as none of my friends or family knew anything about NF. I exchanged email addresses with Marg and she also put me in touch with Rhonda. Thus began what I hope will be a very long lasting friendship. Thank you Marg and Rhonda for your patience and for the time you spent trying to answer all my questions. I remained in touch with Marg and Rhonda by email and was very sad when cancer took Marg in 2009.
I was an executive member of the local autism society for 6 years. With a friend, I created a local support group for parents of children with autism. I also chaired a parent advisory committee for a government funded therapy program. I know how important and beneficial it is to get people connected together. I decided to leave my involvement with autism and become involved with NFSO. I have held positions on the board for a number of years. It's March 2011 now, and I am currently your NFSO president.
Over the years, my daughter has been lucky with her NF. She is now 14 years old and although she has many NF1 characteristics (cafe of laits spots, freckling, learning difficulties, numerous subcutaneous neurofibromas, unusual eye nerves, many brain findings (UBO's and lessions), tumors on the spinal nerves, a facial plexiform tumor, etc...), none of these have led to a serious problem as yet. I try not to worry about what the future will hold because it seems that there is no medical professional who can truthfully calculate what her NF will do. Sometimes the "not knowing" is very hard to deal with.
I like helping people and enjoy organizing and participating in activities that benefit those whose lives are special. I have had an opportunity, through my involvement with NFSO, to met or speak with an amazing variety of people living with NF. Some of their stories are comforting (those will only mild symptoms) and some are scary (severe untreatable symptoms, numerous surgeries, amputations, no quality of life). I have a need to be involved in the conditions that affect our daughter's life. Anything that can be done to share the knowledge, bring further awareness and connect people together might someday help my daughter and others like her.
