Family Stories

If you are the parent of a child with a peroxisomal disorder we want to hear from you!


Ethan Marshall

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Phoenix Smith

Phoenix is almost 9 now and with years of therapy behind him can count up to 20, knows and draws the alphabet, keeps up with his peers on the playground and loves to talk. 


His biggest obstacle is still his speech and working on slowing down and speaking more clearly. Phoenix has many friends who love and protect him.


Phoenix loves superheroes, LEGO and watching toy reviews on YouTube. He is incredibly affectionate, always wanting cuddles and kisses and also annoys his two brothers daily.


It is lovely watching him grow, not letting his disabilities hold him back. I hope for Phoenix and all affected children to reach their fullest potential with a smile on their face.

Cole Tyler

Joining our Family Directory
  • The GFPD will stay in touch with you.
  • We will connect you with resources and other families in your area.

  • Most importantly, once you complete the GFPD Family Directory form​​
    we will give you access to our private Facebook support group!​

If you are the parent of a child with PBD-ZSD, we want to hear from you! For more information, please contact GFPD Family Educations and Engagement Liaison, Katie Sacra at


All “Family Stories” were written by the families themselves and represent their opinions and views. These views are not those of the Global Foundation for Peroxisomal Disorders.