Have you heard of it?
PBS is the disease my husband was born with - you know, the one that gave him a life expectancy of 1 year? It's incredibly rare - something like 1 in 40,000 live births. You can read more about symptoms and such HERE. In our lives, Prune Belly Syndrome is the reason behind the kidney transplants and the infertility, as well as high blood pressure and a few other not-so-major things.
In his lifetime, Herb has known about three other people with the disease - some healthier and some sicker than he. But they were mostly from his childhood, and before the rules of HIPPA kept people with similar diagnosis from connecting. Herb's been generally healthy for almost seven years (transplantiversary this month!!) and with the onslaught of social media, had never really considered connecting with other people who have PBS.
About a month ago, soon after we moved, Herb was at our storage unit closing out our account. On the counter sat a jar with a sign that said, "Noah's Fund: Noah will need a kidney transplant when he turns two." He asked the cashier if she knew any information about "Noah," and she told him to look on facebook. Soon he found Noah's facebook page, and before the night was over, Herb was connected with Noah's family and found out that not only does Noah need a kidney transplant, but he also has prune belly syndrome.
|Herb and Noah: Prune Belly Brothers|
You can follow Noah's journey on his Facebook Fan Page: Noah's Fund.