Breathe Beyond Boundaries for Bennett

04/09/2026

Taking on the Hawks— Let Em Know! 🏀

03/30/2026

Plan B— if professional basketball doesn’t work out, he will be an NBA dancer 🕺

03/26/2026

We received Bennett’s latest lab results earlier this week, and unfortunately they’re still not where we want them to be. Even after taking every precaution and pausing his infusions, his numbers remain concerning.

Right now, we’re trying to figure out what’s causing this — whether his body may be attacking his kidneys, similar to what we’ve seen with his lungs, or if it could be related to his weekly infusions. Because those infusions are so important for protecting the rest of his body, we’ll be restarting them this weekend while continuing to monitor everything very closely.

This is hard and uncertain, but like everything else, we will face it head-on and figure it out step by step.

Bennett, as always, continues to amaze us. He’s handling all of this with a smile and not letting it slow him down one bit. His strength is something truly special.

And through it all, his sister has been such a healing light for him — always uplifting him, encouraging him, and right by his side. It’s incredibly humbling to watch your children connect in this way and help carry each other through the hard moments. 💙

03/20/2026

Yesterday, after meeting with the medical genetics team, we stopped for Bennett’s routine labs—something that’s become part of our normal. But today, we got a call that completely took the wind out of me.

His kidney levels have risen significantly. For now, we’ve been told to stop his infusions immediately and repeat labs first thing next week, including a full renal panel. If those numbers are still high, we’ll need to see a nephrologist right away, as there’s concern this could be the early stages of kidney failure.

This was so unexpected, and honestly, it feels overwhelming. Just when it seems like we’re making progress, something else knocks us back a few steps.

If you can, please keep Bennett in your thoughts and prayers. We’re holding onto hope and taking this one step at a time.

03/19/2026

Today is the day! 💙

We’re at the Division of Medical Genetics/PKU at Children’s Hospital of Pittsburgh and feeling hopeful, strong, and ready for whatever comes our way.

Grateful for this opportunity and all the support around us—keep the good vibes coming! ✨

03/16/2026

03/16/2026

Where do I even begin… today was one of those moments that will stay in our hearts forever. 💙🏀

The day started courtside for Cavs warmups, which already felt like a dream. Bennett had the chance to meet Donovan Mitchell’s dad and even got autographs from Max Strus and Nae’Qwan Tomlin — moments he’ll treasure forever.

After warmups, we headed back to participate in the Dallas Mavericks cheer tunnel, where Bennett got to high-five his team. Seeing his face light up in that moment was something I’ll never forget.

The game itself was incredible. Donovan Mitchell scored his 15,000th career point and hit his 200th three of the season, Max Strus made his return looking like he had never missed a beat, and we got to see our Mavericks up close and personal.

And of course… a MAVS WIN! 💙🖤

But the most special moment came after the game. Bennett had the chance to try for Cooper Flagg’s autograph, but instead he gave him one of his awareness bracelets. Watching him share his story and spread awareness meant more than any autograph ever could.

He made so many new friends tonight, soaked in every second, and truly lived his absolute best life.

Some days are just unforgettable. Today was one of them.

Grateful for every moment. 💙🏀

03/15/2026

“It’s Happening…”

02/22/2026

Some days are tougher than others… and today is one of those days. 💙

Since anesthesia, he’s been feeling pretty j***y/ moving lots of mucus — which we know can be common — but it never makes it easier to watch. Today also meant rotating infusion sites, and while the thigh isn’t our favorite, he handled it like an absolute champ. His strength continues to amaze me every single day.

Right now we’re doing what we do best… slowing down, he’s cuddled up under his super soft dinosaur blanket, watching Jurassic World and just letting his little body infuse, rest, and reset. 🦖

02/21/2026

Today was one of those days that gently reminds you how much love surrounds you, even in the middle of hard seasons. 💙

Bennett received a package from someone incredibly special to him — his sweet teacher, Mrs. Owens. The kindness behind such a simple gesture wrapped him in comfort in a way only those who truly know him can. Tonight he’s curled up in his dinosaur blanket, dinosaur light glowing softly beside him, finally letting his little body rest while watching basketball — his safe place, his joy. 🦖🏀

Some days feel heavy… but today was full of reminders that friendship, kindness, and love show up in the most beautiful ways. Holding onto these moments extra tight tonight. ✨

02/19/2026

Bennett’s surgery went fairly well today.

Unfortunately, they were unable to administer the hormone needed to stimulate his pancreas for the specific biopsies, so that portion will need to be rescheduled and completed at a later date.

The team was able to successfully obtain stomach biopsies, and we will wait for those results while planning next steps.

We appreciate everyone continuing to keep him in their thoughts as we navigate each step of this process.

02/17/2026

This sweet boy of mine is scheduled for surgery this Thursday 💙

If you could keep him in your thoughts and prayers, it would mean so much to our family. Please pray that his lungs stay strong through anesthesia and that his biopsies come back clean. He continues to face every challenge with a brave smile and a heart that inspires me every single day.

We are so grateful for the support, the kindness, and the prayers that lift him up. Thank you for loving him right alongside us.