Saturday December 20th will be the 4th anniversary she left my arms to go to Heaven. Its a sad time.
I just found out my little girl has Zellweger Syndrome. I hadn't heard of it before yesterday. She is 7months old. I don't want to post photos or names because she is my foster daughter. I've got lots of questions but don't really know where to start.
Hello. My name is Pamela Marshall. I am the Family Registry and Support Group Coordinator for the Global Foundation for Peroxisomal Disorders (GFPD) and the mom of Ethan, a beautiful 2 year old boy who was diagnosed with PBD-ZSD when he was just 28 days old.I am looking to connect with other families impacted by PBD-ZSD. I have a Facebook page for our son -...
I have joined this site and I offer two more sites one is for any peroxisomal disorder http://health.groups.yahoo.com/group/Peroxisomal_Disorders/messagesAnother is the Zellweger Baby Support Networkwww.zbsn.org When my daughter was born with ZS there was hardly any information out there to help families so I am glad to see more and more interest and support for this rare and terrible syndrome.
Has any parent had success with changing the amount of very long chain fatty acids in their child\'s diet?
heartbroken. . .
I really pray for anyones kid with this disorder.
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