Precision in Zellweger’s Syndrome

We cannot but speak of the things we have lived and experienced.

 

Zellweger’s Syndrome Disorder is a complex disease of deficiencies. DHA deficiency occurs in most

children diagnosed with Zellweger’s Syndrome (a Peroxisomal Biogenesis Disorder). Correction of this

one deficiency proves to be a measure to help our children live as best as they can under its crippling

burden while further research is pursued.   DHA-EE (docosahexanoic acid-ethyl ester) sourced from

small-body, cold-water fish has made a profound impact on our children’s biochemical performance

and ability to live life to their fullest (See Research and Summary Questions). 

 

The most impacted of all organs is the liver, influencing a cascade of problems spanning into every

system, for the hepatobiliary deficiencies are at the root of most all other deficiencies. Along side of

DHA-EE, correcting the poor bile acid flow ameliorates many problems (See Cholic Acid Research).   

 

How can parents support their children with Zellweger’s?

Discover many tips on the Zellweger Spectrum Disorder Information page.

 

Sustaining the website’s intent, the research of the late Dra. Manuela Martinez safeguards that which

we live day by day with our children, and the space serves to honor Dra. Martinez for her sacrifices

and dedication given on behalf of her young patients.  The Manuela Martinez Foundation, research

still “ahead of its time,” is included.

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MAWulf.com

Exemplifies children with Zellweger’s Syndrome supported by DHA-EE (docosahexaenoic acid ethyl-ester), cholic acid, and other insufficiency corrections which profoundly impact  biochemical performance.

 

Offers a ray of hope to parents of children born on the spectrum of Zellweger’s Syndrome by sharing first-hand knowledge and experience.

 

Fosters research which addresses the immediate deficiencies of ZSD and supports personalized medicine based on each child’s genetic and epigenetic profile.

…read about us

Our Families

The families of Zellweger’s…Writing a Different Story shared their children’s case histories, their successes, and even their insights in treatment.

Some have reflected on their children’s lives and the impact they have had on others around them.  Some have related their child’s life story in a blog.

Some have communicated their faith.  And some have made known their sorrow and grief.  But all have shared their enthusiasm, their fervent desire to assist the next generation.

…read more

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