This group has been established to support families with children affected by a Peroxisomal Biogenesis Disorder. The primary disease spectrum of the children in this group is The Zellweger's Spectrum of Disorders. The Zellweger's Spectrum includes Infantile Refsum Disease (IRD), Neonatal Adrenoleukodystrophy (NALD), and Zellweger Syndrome.
I love your story, we have a son Ryan he 13 and it's hard to believe how far we have come, Ryan has been very healthy and has a pretty much of normal life for
hi Sarah, Though I'm not one of the ladies :-), I am very glad to hear your found a neurologist you can work so well with. I hope Jordon's treatment goes well,
I Wanted to update all you ladies quickly. I am in the library at the childrens hospital right now in Ft. myers fl. Jordan has been submitted for 5 days
Sam takes 5 mg of cortef (hydrocortisone) in the a.m. and 2.5 mg in the p.m. too. He didn't need steroids until his leukemia diagnosis. When he goes in for a