We brought our daughter home from China in Dec. 2006, she was a special needs baby with a diagnosis of cavernous hemangioma and concave chest. The hemangioma was bad but treatable. Shortly after coming home we found out her true diagnosis - NF1 (neurofibromatosis) It's a genetic disorder, actually the most common type occurring in 1 out of every 3000. Symptoms can vary from nearly none to multiple. Sydney unfortunately has a very large tumor, it is wrapped around her left lung, her aorta, trachea, and her spinal cord. It also protrudes from her back. You would NEVER know she has anything wrong with her. There is no cure and the only treatment option is surgery. Sydney is NOT a candidate for surgery- there is just TOO much involvement. The ortho Dr. was hoping to have her chest repaired to help alleviate pressure on her spine as she has developed scoliosis (although I can't tell) but this too is out of the question, it would just be too risky. There are a few clinical trials coming up that may offer a glimmer of hope. I would so appreciate a prayer request on your blog - we need all the prayers we can get! Please pray for Syndey and pray BIG! God knows what she needs.
~Sandy
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2 comments:
What a beautiful little girl!! She has our prayers!
I just started reading your blog and came across this post. How is Sydney doing now?
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