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Peroxisomal_Disorders · Family Support for Peroxisomal Disorders

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Activity within 7 days:

18 New Messages - 13 New Photos

Description

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.

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Re: School Dance
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
Posted - Sat Dec 19, 2009 4:59 pm
Betty
maclean.betty
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Re: Jordan
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,
Posted - Fri Dec 18, 2009 1:40 am
Ciera's Dad
vtshopper
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Re: Jordan
Good Luck Sarah and Jordan.  Hospital aint great place to be stuck in for 4 more days. Caroline x ________________________________ From: Sarah Ray
Posted - Thu Dec 17, 2009 8:32 pm
caroline phillipson
csphillipson
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Re: Jordan
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
Posted - Thu Dec 17, 2009 4:15 pm
Sarah Ray
sarahray_06
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Re: Mystery infections
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
Posted - Thu Dec 17, 2009 2:56 pm
Shannon Butalla
dbsamsmom
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2009 77 75 108 189 108 160 121 128 82 108 183 88
2008 52 72 125 57 57 71 57 58 67 50 53 23
2007 2
2006 6

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