Saw a Geneticist yesterday

[Tammy]

GREAT NEWS Kristen!

The things you talked about are really great to hear, but it's even greater to hear you finally got a Dr that seems to know what might be going on.......even if it is off in the future. And not forgetting the fact that she believes you about Coley's diet.

And it's nice to hear that at least the one good thing I knew from the old days hasn't changed.....That the Mom's diet doesn't affect an unborn baby. This has to be a relief to you just to hear it again. It's not your body hurting the little one.

I'm so glad you had a good dr visit.
Tammy

[Chelsea]

Sounds like you had a very supportive Dr there with lots of knowledge.

I am huge believer in cord blood banking. I have banked both Aiden and Gillianne's cord blood with viacord. Diabetes and Alzheimer's are both very strong in my family and the hope on the horizon is promising. I am happy to hear she suggested it to you.

I do think the digestive enzyme replacement will happen sooner rather than later in comparison to the others. Many other metabolic disorders (MCAD and long chain fatty acid) have such enzymes and with the growing population of DFI especially, I venture our younger children will have this option someday. Maybe we should lobby sugar cane producers to donate money to the research, after all it would benefit them if it worked. ;D

[Chelsea]

I don't have much other than my personal story. I would research the different companies and find the one that you are most comfortable with. For me, I chose Viacord, and have been very happy with them from beginning all the way through the updates on medical science and new studies. They have a vested interested since they also research and are not just a storage facility.

Also, the email for the investigator in Japan is no longer valid. I don't read Japanese so I can't find more info on the Fukui website either.