Two-Year-Old Born Battling Rare Prune Belly Syndrome Needs a New Kidney
Parents of a 2-year-old named Kaleb, who was born with a rare condition, were beside themselves upon learning that their son needed a new kidney. But in a heartwarming turn of events, a woman who had been following their story on Facebook volunteered as a donor—and she turned out to be a perfect match.
Kaleb Perry was born with an extremely rare condition called Prune Belly Syndrome, which is characterized by a lack of abdominal muscles, causing the skin on the abdominal area to wrinkle and appear "prune-like"; undescended testicles in males; and urinary tract malformations. Although he has been fighting various health challenges since his birth, it was only recently that doctors said he might need to go on dialysis.
Kaleb's mom, Mandy Perry, had been sharing details of her son's medical journey on a Facebook page called A Miracle for Kaleb, and a follower named Susie (who has chosen not to disclose her last name to the media) reached out shortly after the Perrys were confronted with Kaleb's kidney issue. The mom of three happened to live near the family in Fresno, California, but isn't related and had never met them until recently.
"She called me and said, 'They approved me and I get to give a kidney to Kaleb,'" Mandy told ABC 13. "Automatically, I was just in tears because I don't know what to say."
She later shared on Facebook that the transplant surgery will occur at Stanford on Tuesday, May 28.
"My honest feelings are that I’m excited but absolutely terrified," Mandy tells Parents.com. "A transplant gives life, but it’s not guaranteed and it’s not a cure. The unknowns are so overwhelming. But I will say that since Susie reached out to us about her being a match for Kaleb, I felt so much relief and peace. We are incredibly thankful for her humility and selflessness through all of this. She is a gift, and it’s so inspiring and encouraging to think that someone would offer such a huge gift, a life-saving gift. So, although this journey is so scary, we have felt so much peace in knowing and believing this is the right path for Kaleb. We just have to step out and faith and know that God is taking care of Kaleb and in control of all of this."
Mandy encourages other parents fighting a similar battle to never give up hope or stop fighting or advocating. "You are their voice," she says. "Become a specialist in your child’s disease. Find someone that you can go to if you are struggling, a friend, a spouse, a pastor, a counselor."
Before Kaleb's operation, the Perry family will celebrate the donor match by taking a trip to Disneyland.
Check out Kaleb's official GoFundMe to support the Perry family.
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