Monday, September 6, 2010
It's hard to believe but Austin just turned 3! Besides just being amazed that my baby is starting preschool and 3 years have gone by, three years ago we were told that he had a 10% chance of living to be 3 years old. We celebrated his birthday with our fantastic group of family and friends. This is a video of Austin's friends singing Happy Birthday to him!
In July we were lucky enough to attend the 2010 Nevus Outreach Conference. This year it was again held in Dallas, TX. We spent several days visiting our dear friends in Austin (yes Austin is named in honor of the city of Austin!) and then came to Dallas to spend the rest of the week with our wonderful Nevus family. It was wonderful to return to the conference having 2 more years on this disease and a lot more hope and optimism. Of course we also enjoyed seeing all of the great people that we met 2 years ago again, and spending time with parents who truly understand our situation. We were extremely fortunate to hear from and have one on one consultations with some of the world's top experts on large nevi and NCM. I had the opportunity to sit in a small discussion over drinks one evening with several of the world's top experts on nevi and other parents dealing with NCM. Priceless. Genetic research currently being done in England sounds very exciting and groundbreaking. Many participants at the conference (parents & children) had their blood drawn in order to contribute to this research (though we didn't because Austin wouldn't comply). We have always been told that the condition is not hereditary but apparently new research is proving otherwise. Not that parents and children both have giant nevi or NCM, but that they may be passing down a gene that causes the condition in the right circumstances. The research is being done by Veronica Kinsler at Great Ormond Street Hospital in London. She even introduced the concept of "CMN syndrome"- the idea that our children having large/giant nevi is just one of a collection of symptoms that all fit together- for instance, that many (most) of them have similar facial features. Sounded crazy until she started putting pictures on the screen that really did look alike and guess what, really did look like Austin. Even more amazing, she said they may have identified the gene that causes this syndrome! There was an overwhelming feeling that day that a lot of earth shaking (at least to those in our world) information is coming down the pike very soon. It was extremely exciting to see and hear researchers and doctors from the US and Europe working together and discussing their research. They are going to have an international science conference next year for just the scientists/doctors in Germany. This is a first and such a huge step! We are so proud to be a part of Nevus Outreach and so amazed at all that has happened in the past 2 years. It is really something to see the kids at the conference 2 years later growing up and changing so much. I especially enjoy the teenagers, many of whom have many, many spots all over their faces and bodies. Beautiful girls and handsome guys who seem confident and happy and Austin is so privileged to have them as his role models as he grows up "spotted."
Today Austin started preschool. He was so excited, he's been asking for weeks when it will be his turn to go to school. He had no hesitation whatsoever about going into the classroom. On "Meet your Teachers" day he walked up to a group of kids and proudly showed them one of his favorite spots, the one on his left hand. Today as I pulled up to pick him up from school the whole class was walking back from the playground holding hands. I have to admit to a few tears, thinking this is my baby, the same one who was in that hospital bed clinging to life 3 years ago. I dared to hope for this, I admit, but to see it really happening in front of my eyes is the best. I'm so proud of him!