Often times The PKD Foundation markets PKD as being, “One of the most common, life-threatening diseases,” which can be confusing if you know us because what my kids have – ARPKD – is not common. It’s very uncommon. It is the less known, about 30% fatal, rare form of PKD.
So, here is my post about Polycystic Kidney Disease so you’re aware. Not about the statistics. Not about the numbers of people. It’s not about the sound bites that talk about how PKD is more common than a bunch of other, well-known diseases combined.
It’s about the impact on families – especially children – who live with the disease.
PKD has impacted our family in immeasurable ways. We’re not without hope, nor without gratefulness to our family’s kidney donors, and our circle of love and support. We think fighting for a cause like ARPKD is showing our kids how to fight for their lives and their place in the world and how embracing challenges can be an empowering tool in life, but let’s not kid ourselves, PKD – in any form, especially ARPKD – can be devastatingly horrible.
Our kids’ lives are forever changed because of chronic illness and has caused them pain and heartache. PKD has robbed them of free time and their health. It’s robbed them of some of their childhood and their security and their sense of well-being. PKD has robbed them of a typical childhood, free from talk about blood filtering, death statistics, life-long challenges and life-altering symptoms. PKD has robbed us of financial security and the timeframe of our retirement. PKD has robbed them of friendships, activities, normalcy and privacy.
So, PKD Awareness Day to me is more than a ribbon color, graphic, Tweet, status update to make you aware of the facts about PKD. Behind all of those sound bites are the names of people who’ve lost their lives and their babies, their hopes and their dreams. It’s about people who fight everyday to live and fight to live a full life and do it, in spite of PKD.
It’s about my kids, Gage and Quinn. Amazingly brave, and funny and resilient. It’s about how they are students of advocacy because they have to be, for themselves. It’s about how they have emotional pain and physical pain because of PKD, yet they go through life with grace.
Gage and Quinn go through life with grace, in spite of PKD. Let that be your new sound bite.
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