This group is designed to honor the children born with Zellweger Syndrome and other terminal orphan syndromes/diseases. It is also for the parents to post their poetry and letters and stories of their child that has ZS. Even if you do not have a child . . .

This group is designed to honor the children born with Zellweger Syndrome and other terminal orphan syndromes/diseases. It is also for the parents to post their poetry and letters and stories of their child that has ZS. Even if you do not have a child with ZS we would like you to join and be a blessing to these families by reading their stories, raising awareness and praying for the little babies that have no chance at survival. Tell them you hear them. Tell them you care and that they are not alone. Thank you!

What is Zellweger Syndrome?

Zellweger Syndrome is a rare, congenital (present at birth) disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. Zellweger syndrome is one of a group of genetic disorders called peroxisomal diseases that affect brain development and the growth of the myelin sheath; the fatty covering that acts as an insulator on nerve fibers in the brain. The general prognosis for Zellweger babies is 6 months to 1 year at best. There are a few less severe cases that live to be 7-8 years old, but that is truly rare. It is a chromosomal disease; therefore both parents must carry the gene. If you have one child with the syndrome, your chance of other children with the same syndrome is 25%.


What are orphan syndromes/diseases?

Orphan syndromes/diseases are those that are rare enough that they do not attract a lot of research attention. Groups like ZBSN help to try to bring orphan syndromes/diseases to light so that research will be done to help find a cure. Just because it is rare does not make it any less devastating - when it is your child.

What can I do to help?

1). INVITE! We need to bring in 100 outside people to Gather in order to be able to accept donations from gather members via the points system. This would be an awesome thing for us, so, if you don't mind, when you invite members to the group, invite them through the ZBSN invite link. It invites members to the group and to Gather, giving you the same credit as if you invited any other way, but it helps add to the number of members who have joined from outside of Gather. Be sure to let them know that they need to join from the e-mail message, and let them know that they will be helping to make a difference in the lives of families with terminally ill babies.

2), Make donations. Check out Zellweger Baby Support Network Can Now Accept Donations (http://www.gather.com/viewArticle.jsp?articleId=281474976721035) for more information, and look for opportunities to donate posted periodically in the group. ZBSN is an official charity and your donation is tax deductible.