You may not have heard of it, but polycystic kidney disease is the most common life-threatening genetic disease, according to the National Kidney Foundation.
Polycystic kidney disease (PKD) is a genetic disorder that can sit undetected until the worst case scenario happens.
It is more common than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia, combined.
There are two types of PKD. The first, autosomal dominant polycystic kidney disease (ADPKD), affects about one in 500 people.
It normally appears in adult life and is a life-threatening disease that involves cycsts growing on the kidneys, which can lead to failure.
The other is autosomal recessive PKD (ARPKD), which affects newborns. It is more rare, affecting about one in 20,000, and, because it is a recessive gene and both parents have to have it, chances are it is not diagnosed until after the baby is born.
Ahwatukee Foothills residents Dr. Mac and Heather Gillis lost their newborn son, Bowen, in April, 13 days after he was born.
"They didn't detect anything in the ultrasound," Mac said. "It wasn't until he was born did we find out something was wrong."
The two are now on a mission to spread awareness about PKD and raise money for the PKD Foundation. But they aren't alone.
Friends and relatives have come together for two upcoming events that will raise money to help them reach the goal of $20,000 they hope to donate to the foundation.
"We have had amazing support," Heather said. "We want to thank everyone who has been involved in helping us."
The first event is a casino night on Oct. 21 at Foothills Golf Club, 2201 E. Clubhouse Drive. For an entrance fee of $50, participants will receive chips to play blackjack, roulette and craps. There will also be a silent auction.
The event will be from 6:30 to 10:30 p.m. To find out more, or to buy tickets, contact Heather at email@example.com.
Mac will be participating in a half iron man in Tempe on Oct. 23. To find out more about his cause, visit www.pkdcure.org/bowen.
On Oct. 16 there is also the Phoenix Walk for PKD at Market Street at DC Ranch, 20645 N. Pima Road in Scottsdale. Registration begins at 7:30 a.m. and the walk starts an hour later. To find out more information, email firstname.lastname@example.org.
To read Bowen's story, visit www.caringbridge.org/visit/bowengillis.
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