First, my family and I would like to thank you for taking the time to read our story and for your support and prayers.
In 2000 my husband Dan and I found out we were expecting our first child! We were very excited and were told we would be having a little girl! Then we got a call from the OB/GYN saying they would like us to come back in to go over the ultrasound. Since this was our first pregnancy we thought this was all normal. When the Dr. came in she started the ultrasound then she looked at me and said “This baby is not going to make it you need to terminate your pregnancy.” Exactly like that. At the hospital a genetic specialist first told us of the disease Polycystic Kidney Disease. She explained it is hereditary but since neither Dan nor I had any family history of kidney disease it was even rarer in our case. We were told we were both carriers of the recessive gene that causes PKD. The chances of the two of us meeting and having a child with the disease were 1 in 1,000,000. The next few weeks were a blur as we visited every doctor or specialist we could get an appointment with and were told again and again to terminate the pregnancy. I was 5 months at this point and terminating the pregnancy was not something we would even consider. For us it was not a choice. On July 9, 2001 Ashley Grace Capita (35 weeks gestation) passed away after 37 wonderful minutes with her Mommy and Daddy. She died after opening her eyes and looking into Dan’s eyes while he was holding her and she took her last breath. She looked perfect.
Then in 2003 we had Nelson who we were told was PKD Free and healthy! YAY! Nelson was born at 34 weeks and was absolutely perfect!
In 2005 we got pregnant again and at our 4 month ultrasound they told us all was going great with our son Daniel’s kidneys so we moved into a bigger house on acreage, decorated the nursery and prepared ourselves for another baby boy. Then at our very next ultrasound and weeks after we moved into our new home we were told Daniel also had PKD. Sadly on October 8, 2005 Daniel Steven Capita passed away after 18 hours and again from PKD.
In 2007 we had Nicolas Garrison (YES another boy!) on November 30, 2007 and after much testing and 14 days in the NICU he is a fat, healthy 14 month old. So that is our story in a nutshell.
The story took a horrible turn for the worse on February 7 when Nelson was in a bad accident and by the Grace of God walked away with only a scratch (MIRACLE!) but when we took him to have him checked out at our local emergency room we found out that the past tests were wrong and Nelson also has PKD. Needless to say our worlds have been turned upside down and our minds are reeling but we are trying our best to stay positive and to keep our faith. We also were told there is a 50% chance Nicolas has or will develop PKD and that Dan and I may have it. It is hard to believe one disease is destroying our entire family! From 2/7/2009 until 2/24/2009 Nelson went from 1 cyst to so many in each kidney they did not even bother counting them. We desperately want and need to raise money for PKD Research so that we can find a cure or at least a form of treatment. As of now there is nothing we can do for him. People will comment we are lucky to have found out but to Dan and I we are not lucky because just like our previous pregnancies we can do nothing but wait. PLEASE help us raise money for PKD Research. 100% of all money raised will be sent to the PKD Foundation in honor of Nelson. Thank you again.
Thank you again your support means more to our family that we can ever tell you.
