Sunday, August 25, 2013

Raising Activists

This past June I took our daughter Quinnlin to Washington, DC to speak to legislators about several
issues that impact PKD (polycystic kidney disease) patients. Among the issues, we were asking for support for a bill that would allow coverage for immune suppressant drugs beyond the 3 years the government currently pays for from the date or organ transplants ($1,000-2,000 per month). When people can't pay for their drugs, they can lose their transplanted kidney and go back on dialysis to the cost of over $10,000 per month.

We talk a lot about the issues our kids face medically, socially, and legislatively so this was a great time to show Quinnlin in action what it means to be an activist politically.

She wanted to present her story herself so we settled on her sharing her story with a flip format presentation on paper with pictures. Here's the copy (minus the pictures):

My name is Quinnlin. I am 11 and I have PKD. My brother has PKD too.
His name is Gage and he is 14.

 PKD stands for Polycystic Kidney Disease and the cysts grow in our kidneys and make our kidneys not work.

 Some kidneys grow to the size of a football.

 We have been through a lot. My brother almost died. He had to have dialysis.

We both had kidney transplants when we were 8 years old.
We need liver transplants some day too.

We were tested at the NIH in 2008 and we have raised a lot of money for PKD research. 
We need more research though. 
We wish we could have taken something that would make the cysts go away.

I hope you will remember my brother and I when you think about
funding for PKD research, changing FDA policies, the shortage of kidney donors 
and inadequate Medicare coverage for my kidney drugs. I hope other kids don’t have to go 
through what we had to go through.

Thank you for listening to my story.

We had four appointments during one day so there was a lot of running around to appointments with a lunch in between them to sit and visit with fellow activists, including a dad who lost his baby to PKD. 

I am proud of her for a lot of reasons... how she behaved with other activists, the role-playing at training she volunteered for the day before in front of 70 people, her patience during all the waiting, but mostly I'm proud of her because she wanted to be there and share her story. My activist in training.

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Julia Roberts lives in Atlanta, Georgia with her husband and two kids. The kids have had kidney transplants, will require liver transplants one day and have learning disabilities and mental illness. She blogs at Kidneys and Eyes and is the co-founder of Support for Special Needs. 


  1. Congratulations to Quinnlin on her heartfelt advocacy, activism and bravery! Public speaking has to be on the top ten list of most folk's biggest fears. You have raised an amazing young woman. Good luck with the campaign.

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