Kids with PKD

Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
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Posts: 1
Joined: Wed Oct 16, 2013 5:06 pm

Kids with PKD

Postby Matt Mainolfi » Wed Oct 16, 2013 5:17 pm

My wife Carol and I found out about PKD when my son was in utero during a routine ultrasound. Cysts on his what? We were sent to Hopkins, it was assumed it was from me, but my wife is a mutant, so she and my son were asymptomatic until about 5 years ago.

AFter several years of dialysis, I donated a kidney though a paired exchange between my wife and I though the U of MD Medical Center and Johns Hopkins. But we couldn't stop there. Carol and I are the Baltimore Chapter Coordinators for the PKD FOundation, and we just had our first walk after a three year absence for the Baltimore Chapter.

Our son is in perfect health, junior in college, runs cross country and exhibits no signs of PKD, except the slowly growing cysts on his kyds. Our life's work has become clear - if it was your only child , what would you do?

bestdayever

Re: Kids with PKD

Postby bestdayever » Tue Oct 22, 2013 5:43 pm

I agree, there isn't much we wouldn't do to save our kids from PKD. There isn't a lot you can do so I put my energy into fundraising so the research carries on.

Posts: 10
Joined: Mon Nov 25, 2013 11:56 am

Re: Kids with PKD

Postby LeslieW » Mon Dec 16, 2013 11:30 am

Hi Matt, it's great to hear from you, and thank you so much for the work that your family does to fight PKD!

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