Our son Kingston was born with a rare condition called bladder exstrophy, where the bladder forms outside the body. Though otherwise healthy, Kingston has already been through more than most adults — including a major surgery at just 2 months old to relocate his bladder and reconstruct his genitalia.
We found out about his condition during pregnancy, and from that moment, we knew we’d face a difficult road — but also that we’d face it together.
That first surgery lasted 11.5 hours. As a father, I can say it was the hardest day I’ve ever experienced. Seeing him wheeled away, then waiting, hour after hour, not knowing how things would go… I’ll never forget it. The recovery was long — two weeks in the hospital, then several more at home — and it was incredibly hard to balance being there for Kingston and also present for our other two children.
Now, at 7 years old, Kingston is preparing for another major step: bladder and bladder neck reconstruction surgery.
This operation is a critical part of his journey toward better bladder function and greater independence. Right now, he wears a pull-up, and while he’s a bright, outgoing, and well-loved kid, he sometimes gets embarrassed about it. We want to give him every chance to thrive with confidence.
And he is thriving. Kingston is full of energy, personality, and kindness. He’s made a lot of friends, and his spirit is nothing short of inspiring. Watching him face challenge after challenge with such courage is humbling beyond words.
We’re fortunate to live under an hour from the incredible team at CHOC, and we’re even more fortunate to have a strong community of friends and family who show up again and again — bringing meals, helping with the kids, cheering Kingston on. We are grateful every single day for that support.
Still, this journey carries real costs — emotionally, physically, and financially. We’re a family of five making ends meet on one income. Insurance helps, but there are many out-of-pocket expenses for:
• This upcoming surgery and follow-up care
• Physical therapy, ultrasounds, and co-pays
• Medical supplies and comfort items during recovery
• Transportation to and from the hospital
• Lost income during time off work
If you’re able, we’d be so grateful for any donation to help us cover these costs. Every contribution helps ease the burden and ensures we can stay focused on helping Kingston heal.
And if now isn’t the right time to give, even sharing this page with others would mean so much to us.
Thank you for your love, support, and kindness —
The DeStefanos
#TeamKingston
