Have anyone hear of Zellweger syndrome?

Sunshine - posted on 08/13/2013 ( 3 moms have responded )

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my grandnephew was born with the syndrome and the Dr's said he will live from six months to a year...He is now seven months old. there is no curse for this syndrome. need recommendations... thanks

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Darcy - posted on 08/13/2013

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I have researched this. My best advice is to pray for your grandnephew. There is no cure and no treatment this is a syndrome that happens during development however I do suggest having your niece and nephew go to a genetic doctor and have a genetic test done to see if they have the gene that can cause this. Scary recommendation I know but if they don't go then they might nto want to try again. Also gentic doctors are helpful in finding support groups and handing information on the conditions that appear. They can also easy your family into understanding better about whats going on.

I am not saying this to make you feel guilty. I have been through genetic testing. My daughter has an active 1q21.1 microdeletion and a beigne duplication on her 16th chromosome. I want you all to have peace of mind about your grand nephew and know that he must be helping somewhere in the world. Also do not give up. There is a reason your grandnephew was born this way it might be he helps find treatment for afterwards that helps them live longer lives.

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Pamela - posted on 01/11/2015

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Hi. I'm new to this site, but I am the mom of a child with PBD-ZSD. I am part of the Global Foundation for Peroxisomal Disorders (GFPD) and would love to connect with your family. You can learn more about the GFPD at www.thegfpd.org. I look forward to hearing from you.

Sunshine - posted on 08/15/2013

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Thanks. God have led us to a woman in NC who has two kids with this illness one is now 15 and the other one is 34. There is a supplement that was research my a doctors in spain, who now have pass away. This supplement and curse a lot a baby with this syndrome, but, b/c it is not FDA approval doctors will tell you. Bu thro prayers God led us to her. Thanks again and may God continue to add a blessing to your life.

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