The Journey We Are On.....

Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.

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Ethan and his Daddy!

August 28, 2011

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Labels: Global Foundation for Peroxisomal Disorders Infantile Refsum Disease (IRD) Neonatal Adrenoleukodystrophy (NALD) Peroxisomal Biogenesis Disorder (PBD) - Zellweger Spectrum Zellweger Syndrome

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Krystal MartinAugust 30, 2011 at 1:43 PM
Pam,

This is beautiful! Thank you for sharing this moment with us!
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About Me

JPEMARSHALL: On Friday, August 20th, when Ethan was just 28 days old, he was diagnosed with a Peroxisomal Biogenesis Disorder- Zellweger Spectrum Disorder (PBD-ZSD). These are really horrible nasty disorders. The geneticist believes that Ethan’s is at the moderate/mild side of the PBD-ZSD spectrum – but there isn't anyway to really tell where Ethan's PBD-ZSD journey is taking us. Both of Ethan's gene mutations have been found, but even this can't tell us exactly what Ethan's life will be like. Only the Lord knows what the future holds for our little man.

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Global Foundation for Peroxisomal Disorders
Infantile Refsum Disease (IRD)
Neonatal Adrenoleukodystrophy (NALD)
Newborn Screening
Peroxisomal Biogenesis Disorder - Zellweger Spectrum Disorder (PBD-ZSD)
Peroxisomal Biogenesis Disorder (PBD) - Zellweger Spectrum
Zellweger Syndrome
Zellweger Syndrome (ZS)

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The Journey We Are On.....

Ethan and his Daddy!

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