Since Arabella was born, I have been battling with the thought that she had received NF1 from me. I knew, even before April got pregnant, that Belle had a 50% chance of getting it. We discussed this many times. I know at the time that April did not fully understand what NF was or the complications that can come with it. But, we still decided to have our own biological child. Shortly after her birth, I begin to notice the appearance of the cafe au laits, an indication that NF was going to be a part of her life. After a discussion with her Pediatrician, he referred us to a wonderful doctor in Memphis. So far we have had a full genetic workup and an MRI of the brain and orbits. Things appear to be ok so far. The doctor commented that Belle's development, both physical and mental/intellectual are above average for her age. That is great news! So, we are in a period of waiting and watching her grow and looking for anything out of the ordinary.
Now, the birth of this blog is because I have lived with NF for over 30 years and have NEVER had the opportunity to express what I was feeling or how this condition affected me. I had also never met anyone else who had or even heard of NF. This past year I have had the desire to do something to help raise awareness and funds. This past Saturday (Oct. 16, the day before my birthday) we had the opportunity to participate in a "Great Steps for NF" fundraiser at Shelby Farms. I met some amazing young people who are dealing with NF as well as their wonderful parents. It was nice to actually meet people who understood what we are going through. It was a fun time and now I am planning to host 1, maybe 2 walks in the Spring of 2011. I will for sure do one around Southaven, and I am toying with the idea of hosting one in Meridian, MS. Any thoughts? Am I crazy for even thinking that way? Either way, I will use this as my main forum along with facebook to get the word out about the fundraiser. I need all the help I can get.
Another purpose of this blog is to keep everyone updated on our journey to adoption. April and I have decided that we want a second daughter, but this time we are going to adopt. We are in the process of selecting and agency to go through and then we will get a home study conducted. Pray for us, we are excited about what this journey will be like.