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Posts Tagged ‘GFPD’

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.

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Our favorite little guy – at age one.

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MP doesn’t typically get personal on these pages, but today, as she prepares to launch Cute Potato’s first online fundraiser for The Barbara Bush Children’s Hospital, she thought it would be worth sharing a CP family story with you.

Meet Jack.
In August, MP’s nephew Jack was born weighing 6 lbs. 10 ounces, looking healthy, fabulous, and ready to greet the world. After a few days in the hospital, Jack’s mom and dad, both new parents, were looking forward to bringing their baby home to begin their lives together as a family. 

MP meets her nephew for the first time.

MP meets her nephew for the first time.

During his first week, Jack lost weight. He was nursing, but struggling to do so. His mom grew concerned and checked in with Jack’s pediatrician. He told her not worry. Babies often lose weight when they first arrive home. Then Jack lost more. He wheezed when he nursed. He pulled his legs to his belly after feeding and cried. His parents decided to call a lactation consultant. When the consultant heard the baby nurse, she recommended he be brought to the hospital immediately.

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