Precision in Zellweger’s Syndrome

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

The children with Zellweger’s Syndrome or Peroxisomal Biogenesis Disorders who have been treated with 97% pure DHA-EE (docosahexanoic acid-ethyl ester) offer a ray of hope to others bearing the same diagnosis. Zellweger’s Syndrome is a disease of deficiencies, and DHA deficiency occurs in most children diagnosed with Zellweger’s Syndrome (Peroxisomal Biogenesis Disorders). 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.  As parents we reach out to others to share how pure DHA-EE has made a profound impact on our children’s biochemical performance and ability to live life to their fullest. It is our hope that the information contained in the medical records of our children might be of value and benefit to not only to Peroxisomal Biogenesis Disorders research, but other diseases and rare disorders which share similar symptoms. A summary of DHA-EE benefits in children with Zellweger’s Syndrome may be accessed under Summary Questions.

Sustaining the website’s intent, the research of the late Dra. Manuela Martinez on Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome) 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 diagnosed with Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome). The Manuela Martinez Foundation, dedicated to treatment of Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome), is gone, but her research is still “ahead of its time.” Much of her former website information on Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome) is included.

Also expressed here are tributes to individuals, companies, and organizations who have so generously taken a vested interest in helping the children with Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome). Each family’s personal story of thanks can be read under Tributes, A Special Thanks.

Additionally, the “Families” section of Zellweger’s …Writing a Different Story offers a positive perspective and network for those families with children diagnosed with Peroxisomal Biogenesis Disorder (Zellweger’s Syndrome) a place to celebrate their children’s lives and accomplishments, no matter how small they might be, and to support and encourage one another in face of the many obstacles and challenges presented by Peroxisomal Biogenesis Disorder (Zellweger’s Syndrome).

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To exemplify children with Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome) who have had the opportunity to be treated with 98% pure DHA-EE (docosahexaenoic acid ethyl-ester) by offering irrefutable proof from their medical records that DHA-EE has made a profound impact on their performance and ability to live life to its fullest.

To offer a ray of hope to parents with children born on the spectrum of Zellweger’s Syndrome from veteran parents through the encouragement of passing on the knowledge of their experiences.

To foster research which addresses the Zellweger child’s immediate deficiencies and supports personalized medicine based on each individuals genetic and epigenetic profile.

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Our Families

The families on Zellweger’s…Writing a Different Story have 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.

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Our current project is to support the ongoing DHA-EE research and how it uniquely works in children with Peroxisomal Disorders.

The Brain Restoration Clinic of Indian Land, South Carolina, dedicated to developing innovative therapeutic approaches and conducting clinical research for children with neurological challenges, in conjunction with Piedmont Research Partners and Integra Research Center, is leading the way for DHA-EE supplementation in the subset of children who may benefit from it.

The Brain Restoration Ministries, a 501(c)3 organization, provides funding for research with MAMA DHA-EE.  Your financial help goes directly to the costs of running the study.

To donate click on the following link: here, or click donate below.