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).