just wondering if anyone has a kid with sanfilippo syndrome my dd and ds3 have just been dignosed with it and off to the childrens hospital on wednesday to see the metabloic professor for more test's but just want to have a chat with others that are going thru the same thing cause after googling alot im left scared and have spent alot of the weekend in tears
Dear Mum of 5,

I am so sorry to hear of the diagnosis..I am in the US, Long Island New York, and I have a daughter who is turning 7 on February 18th who has Sanfilippo Type A. She has a Facebook page that will give you a bunch of information. There is a huge support network for Sanfilippo and other MPS illnesses that I can get you in touch with, and I have Australian contacts as well. I'm sorry, I don't understand the dd, ds, or ds3 references. I would be more than happy to talk to you...would love it as a matter of fact! Please, if you're on FB, find me Danielle Griggs-OConnor, or Emily's page "Emily's Dance, our baby's life with Sanfilippo Syndrome" This is not something you can handle alone! Many hugs and kisses to you!!! My email is lieuslady@yahoo.com

xoxo Danielle