Monday, December 1, 2008

NF- Making it through another year

Today was the yearly appointment for our princess and her genetist who diagnosed her a few years ago with NF-1 which stands for neurofibromatosis type 1. Initially my thoughts were filled with fear and I didn't know much about this condition. Princess checked out in great condition. There are no new cafe au lait spots except for one that started last year on her buttocks that grew quite large and dark. It has not gotten any worse or raised at all for the past 6 months so that makes me feel a lot better.

You would never know she has NF-1. Her teacher was quite surprised when we told her about it but she was very interested to hear the information. She is reaching all of her milestones in school and thensome. We just got a great mid-term report today on that end. She loves her dance and soccer and reading and is a totally normal playful child.

Our truly wonderful doctor who is one of the finest in the country told us today that there are remarkable breakthroughs in the area of medicine and NF-1 and we might want to attend a local conference in January to learn more about it. All I know is that there are some clinical medicinal trials taking place today that give hope to a slowing or stopping of the progression of fibromas and that possibly this would be available within the next 3 years.

I am so excited to hear of this and can't wait to go to this conference in January.

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