Hi,
Its so great to talk to someone who knows what I am talking about!
Have you run into other people with Wolmans or CESD?  Is Wolman's more common than CESD?  I have heard that there have only been 40 recorded cases of CESD, but they also talk about 1/million cases. If so, where is everybody? 
Do you have other healthy children?  I have 2.  One is 4 and one is 5.  But I would really like them tested yet as CESD can present itself until adulthood (?) 
Do you know if you have one child with either Wolmans or CESD, if you have any future children- would they be at risk for the same level of LAL defficency?  Or could it be higher or lower- say if you had a child with Wolman's -could you have another child with later onset CESD -or if you have an earlier onset CESD, would I need to worry about my other 2 kids having a later onset of the disease.
Have you heard anything about prognosis?  All I have heard is that it depends- not too helpful. 
Amy was only diagnosed a couple of weeks ago, so it is still all new for us.  It feels like a huge learning curve.  Its been a challenge to put her on a low fat/ cholesterol diet and keep the rest of my family happy too without making her all seperate meals.  Oh well, the low fat should be good for all of us right :)
Sorry for posting so many questions...

Hi Mary, I just had to share.  I went to visit my 45 year old cousin and he pulls me to the side and said: "Listen, I wrote to a doctor about your disease and I they wrote me back".  I was so touched I started crying of course.  It meant a lot that he went out of his way to do this for me.  He then told me don't worry about it, we just have to keep going.  So then he tells me I have been doing research on this and I start telling him about the support group I joined called LAL Solace and he said oh with Mary Pruitt and I said yes!  He saw your video on FB and that helped educate him and become aware of this disease and I just want to thank you for helping us out and giving us a place to turn to.  It is hard not having anyone to talk to about this but when I come on this page and see all the information and everyone sharing their stories, I feel so at peace, loved and supported.  Blessings to you and your family Mary for what you are doing for the LAL Community.

- Melissa Aguilar

Hi Mary, I would love to see a walk happen for our community.  I think it is very important we all get involved.