Last February, Cute Potato held its first online fundraiser, called Show Your Love: 14 Days of Giveaways for the Barbara Bush Children’s Hospital. If you recall, we kickstarted the fundraiser for our nephew, Little J, who was born with complications.
At the time, it was too difficult to share Little J’s full diagnosis. Our family learned he has a rare syndrome called Peroxisomal Biogenesis Disorder (PBD). A mouthful, right? The genetic disorder touches 1 in 50,000 children, and affects all major systems of the body.
As you can imagine, the CP family was heartbroken by this news. We adore Little J and we want all good things for his life. With PBD, as with many rare diseases, there are a lot of unknowns. The disorder affects every child in different ways, and some children don’t survive past their first year.
Common to many kids with PBD is low muscle tone, hearing and vision loss, and developmental delays. Little J has experienced all of these things, but he’s also surprised us with his tenacious spirit. He is 18-months old now and with the help of a physical therapist, he’s learned to sit up on his own and he can stand with help. It’s amazing to watch because we can tell he is so proud of himself. The smile on his face is HUGE.
Despite all of his challenges, and to his parents’ credit, Little J is one happy, easy-going kid. He’s already taught us so much about life, love, and the importance of family.
This year’s Show Your Love is for Little J and all of the families who have experienced PBD. The Cute Potato team is participating in a 5k race this June called Ilan-a-thon, named after a little boy with PBD who died in October 2010. The proceeds for this race support the Global Foundation for Peroxisomal Disorders (GFPD)—a charitable organization that provides PBD families with the help and educational resources they need for their children.
The GFPD is essential, not only for the outstanding support they provide, but also for their commitment to funding research that creates a better understanding of the genetic disorder. We hope you’ll help this organization and our family reach our goal. If you could donate to our run, we would be so grateful.
You can sign up to donate here (scroll down to the end – the donation choice is the last selection on the list), or simply donate directly to the GFPD here. Can’t donate this year? Simply share this post with friends and family. The more people who know about PBD, the better. Awareness=hope. And all of us could use a little of that.
PS: Want to learn more about PBD? Check out this terrific video for the Illan-a-thon Road Race — it explains the disorder in the simplest terms.