Hurler Disease - MTS 1 - Allen,TX

First of all, your niece and your family is in my prayers. Such an illness is so hard on the family as well as the child who is ill. God bless the little girl.

Take a look at WebMD - it is always a wealth of information. The direct link to the page you will want is:
http://children.webmd.com/mucopolysaccharidosis-type-i

Since this particular disease sounds like it is a rare one, it doesn't have tons of info about it, however it has a great list of many organizations with websites that will have hopefully lots of info for you.

I don't know much about this except what I just googled, but I wanted to tell you how sorry I am for your family. I will pray for you all, and hope for the best. God is on the scene.

I am praying for you and yours!

There's a website called Madison's Foundation (www.madisonsfoundation.org) that is specifically for parents and families of children with rare diseases. It's designed to connect parents and provide info and support. Under the tab "What We Do" there's a drop down menu called rare disease database. You can find diseases there alphabetically and various websites/families etc, who are dealing with them. I haven't looked too much at the website but if you poke around on the site some I'm sure you'll find some help.

I'm sorry for your niece's diagnosis, but it sounds like she is surrounded by a loving family.