Sunday, January 22, 2012
Update on Sawyer's Genetic Testing
When part one of the genetic testing for Neurofibrobromatosis came back NEGATIVE we were thrilled beyond measure! But we still had a second round of testing to go thru to rule out something called Legius Syndrome which is very similar to NF1. And we just got those results back and they too were NEGATIVE!!! It is an answer to our prayers! We are so grateful we had the insurance and means to afford the very expensive testing to rule out these neurological disorders. My heart goes out to the families who can't afford these measures and have to go the "wait and see" approach. We are also thankful for everyone's prayers! We are so blessed!! Here is a picture of one of his several spots. This is the larger spot that was most concerning. They are called "cafe au lait" spots.
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Hello,
ReplyDeleteI stumbled across your page on the web. I have a 13 month old son, Charlie, who is getting tested for NF-1. He has about 6 very very small spots, the largest one is about 1 cm. They are also pretty light. No other symptoms. My husband and I do not have it or know anyone that does. I saw that you went through the testing. How is Sawyer today? How did you make it through the impossibly long test period. What did the doctor’s tell you?
Just reaching out to another mom like me that seems to have gone through similar issues. You have a beautiful blog and the cutest kids!
Emily - mom to Charlie.
Shoptiludropemily@yahoo.com