She's five-years-old, loves all things pink and glitter, and will be sporting a pretty magical costume this Halloween. But what makes Maddie Holt's costume extra special is that it was designed specifically for her wheelchair.
Letter to the Editor: Do an act of kindness to mark Pause for PBD
Peroxisomal Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic, condition affecting multiple organ systems in the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare, genetic disease that most people have never heard of and has no cure.
#PauseForPBD: A SLU Doctoral Student Shares His Son's Journey
PBD-ZSD affects approximately one in 50,000 live births and while the exact number of individuals affected by this disorder is unknown, a few hundred families are currently connected through the Global Foundation for Peroxisomal Disorders (GFPD).
Oct. 5 is a special day for our family as we celebrate Pause for PBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). Our son, Ethan, is seven years old and is one of 175 children known to the GFPD living worldwide with Peroxisome Biogenesis Disorder (PBD).
NJ mom to run Philly marathon to bring attention to rare disease
De Jesus says that it was a specialist in Canada who diagnosed Jaxson with Peroxisomal disorders. The conditions are so rare that if 4 million children are born this year, less than 100 will have the disorder.