Zellweger's Syndrome

Matthew Wulf
Zellweger’s Syndrome became a part of my name when I was ten weeks old. In six to twelve months I was supposed to die, but I didn’t. Zellweger’s Syndrome or Peroxisomal Biogenesis Disorders (PBD-ZSD) affects 1 in 50,000 births, which means each year more than 80 children in the USA are born with Zellweger’s Syndrome. Over half of those born do not live to see their first birthday. At the beginning of my fifth month I made my first of eighteen trans-Atlantic flights to Barcelona, Spain to receive the DHA-EE supplement from Dra. Manuela Martinez. It saved my life.

What is Zellweger’s Syndrome? It is called an autosomal recessive defect affecting peroxisome function. That means I have a deficiency in DHA, and my body does not make enough bile acid, or adrenal hormones. It means I have a hard time absorbing fat soluble vitamins and fats in my diet, further labeling me as failure to thrive. Before taking the DHA-EE my brain was not putting down myelin. I had floppy muscles. My bones grew very slowly. I was totally deaf and blind at birth. I could not regulate my body temperature well. It would be easy to think I was worthless, but I have great purpose to my life.

Even with all my disabilities, Mom and Dad did not give up on me. Because of the DHA-EE my eye sight improved and I could hear better than I did. It took five years of therapy for me to learn to walk. I worked hard to use my vision, my hearing, and my muscles all at the same time. With the help of special teachers I learned to read and to write. I figured out how to do math facts in my head and one day Mom discovered it. I loved learning about the fantastic world of outside and about people who did great things with compromised lives. Music, a mystery that required my good detective skills, began to be deciphered in my mind. But I love mysteries, and today I compose music with many instruments playing in harmony. When people look at me, they have a hard time believing I can live and produce things of value.

To have my life be of value to others is my number one goal. I want to help the children born with Zellweger’s Syndrome and even other sick children who suffer with insurmountable obstacles to health. To envision life could be different for other children by what I do encourages me to continue. Sometimes I dream of what it would be like to walk, run, and jump like other people. I think about what it would be like to talk and sing, or to see and to hear without impairments. I wonder what it would be like to cook savory food. The things I write, the music I compose, and the recipes I create must express thanksgiving for my life and I will donate them to further research to help the children hungry for life.

This is where you can help. Dr. Corbier and his team understand that I have a little time and they are working hard to help me solve the mystery of Zellweger’s Syndrome. They have created the Brain Restoration Ministries to help fund the costs of research and for treatment in order to write a different story for Zellweger’s children and those with other neurological diseases.

Thank you for supporting my dream and my life goal.

Matthew Andreas Wulf