Received a call from Dr. Goldbach-Mansky and Janet Jones Friday
1/31/03. Kieran's genetic testing was completed and he tested
positive for the NOMID mutation. It seems 2 other children have the
EXACT same mutation as Kieran, with different characteristics of the
disease. Thought that was very interesting. Although I am happy
for a dianosis, it still came as a shock. It seems Dr. G-M's team
is learning quite a bit about our children's disease. She said that
now that Kieran has the genetic mutation in his DNA, his children
will have a 50% chance of having the disease. I guess I hadn't
thought that far ahead yet. Hopefully technology will advance in
the next 15 years in the gene therapy field. My husband and I have
really gotten interested in all of the human cloning and DNA testing
isues in the news and President Bush's laws, he is trying to pass.
I don't know much about gene therapy yet, but it seems like the area
could be very political. I am not too keen on human cloning, but
would selfishly hate to see big restrictions on dna study and gene
therapy. I must learn more before I form an opinion. Best wishes,
Michele Griffin
PS...Once again to the Barton's...Janet Jones was talking about your
website. Where would we all be without you bringing us together?
Thanks so much again.