You probably know William as a constantly-smiling bundle of energy. He loves Angry Birds, climbing on things, school, and swim lessons. William also has ARPKD. We'll be taking a short walk during the Northeast Ohio Walk for PKD, but William's journey has been much longer.
William was born in April of 2010 and immediately rushed to the NICU at Rainbow. We found out he had ARPKD and that he was fighting for his life as his lungs (and a slew of other things) were not 100%. We were helpless as we watched our little Frog (William splayed his legs out like a little frog) battle just to breathe. The doctors wouldn't give us odds that he would pull through, only saying that it was up to William to recover. It turns out this kid is full of fight and after what felt like an eternity at the hospital, we were able to take him home.
The ARPKD advanced, though, and William had his first kidney surgically removed in August 2010 and his second one in December of that year. We spent his first Christmas in the hospital, recovering, and learning how to perform daily peritoneal dialysis. If you are unfamiliar with this process, you are fortunate. The dialysis itself occured while William was sleeping at night and required about half an hour of prep along with a thorough cleaning regimen that left our hands chapped and bloody during the winter.
Beyond our regular checkups, we had several more hospital visits ranging from common (yet a huge deal for ARPKD patients) infections to William deciding to pull some medical hardware out of his neck in the middle of the night.
After some delays, we finally got William listed on the transplant list and he received a donor kidney just after his second birthday. What an amazing present!
The kidney made a huge difference to William and really marked the end of the tough times (and no more dialysis!). As he's gotten older, William has been able to switch from liquid medicine to pills he can take all by himself. He continues to grow like a weed and loves running around and rough-housing like any other 7 year old boy. William is currently enjoying the second grade.
So our story has a happy ending. Advancements in research and treatment are what allowed us to have a story at all. The really cool thing is that medical technology is improving at an incredible rate. You can be a part of that by donating to the PKD Foundation or just sharing William's story.