Breathe Beyond Boundaries for Bennett

Breathe Beyond Boundaries for Bennett Bennett is an 8-year-old battling Bronchiectasis, Common Variable Immunodeficiency, and kidney injury.

Through countless treatments, infusions, and medications, basketball remains his greatest joy and gives him strength to keep fighting every day.

Today we met with his pulmonologist because of his ongoing airway issues. The good news is that his pulmonary function r...
08/05/2026

Today we met with his pulmonologist because of his ongoing airway issues. The good news is that his pulmonary function remains stable, which we’re incredibly thankful for.

The difficult news is that his upper airway has been confirmed collapsed again. The collapse is also causing vocal cord dysfunction, cobblestone throat and aspiration. We need to get ahead of this quickly to help prevent further damage to his lungs from aspiration and reduce the risk of severe episodes, since his emergency medications won’t help with this type of airway problem.

We’ll learn more about our treatment/surgical options at his appointment on the 18th.

On a brighter note, Bennett worked so hard during his pulmonary function testing that he earned a dinosaur certificate today. 🦕

Sometimes it’s the little things that bring the biggest smiles.

07/23/2026

Just wanted to share a difficult update with everyone who has been following Bennett’s journey.

The APDS testing came back negative, so while we didn’t get the answers we were hoping for, we did uncover something equally concerning.

After taking a much deeper look at his immune system, we learned that Bennett’s total B cells and immature B cells are critically low—nearly nonexistent. Even with his weekly infusions, which are meant to help supplement and support his immune system, his levels remain far below where they should be. His body simply isn’t responding the way it should.

The hardest part to hear was that his bone marrow is not producing healthy immune cells, and his stem cells are depleted. His body has very little ability to defend itself against infections and zero protection from tumor growth. It feels like we’re watching one piece after another fall into place, and it’s terrifying knowing we still don’t have the answer as to why.

Because of how serious these findings are, insurance immediately approved the Inborn Errors of Immunity and Cytopenias Panel. This is a comprehensive genetic panel that looks for rare severe immune disorders, bone marrow failure syndromes, malignancy predispositions, and other life-threatening conditions that could explain what is happening. We are praying this testing finally gives us the answers we’ve been searching for so we can finally help his body fight.

To say we’re overwhelmed would be an understatement. Some days it truly feels like we’re living one appointment at a time, waiting for the next piece of news that could change everything. As parents, hearing words like these about your child is something you can never prepare for.

Please keep Bennett in your thoughts and prayers. We are holding onto hope that this next round of testing will finally give us the answers we desperately need and, more importantly, a path forward. He continues to amaze us with his strength, his smile, and his determination—even on the days when his little body is fighting battles most people will never see.

Thank you to everyone who continues to check in, pray, and stand beside our family. Your support means more than you’ll ever know.

We made it to Cleveland Clinic! Bennett’s pulmonary function testing looked great—even with the current air quality.Out ...
07/17/2026

We made it to Cleveland Clinic! Bennett’s pulmonary function testing looked great—even with the current air quality.

Out of an abundance of caution, he’s traveling with a mask and his emergency inhalers and now emergency steroids due to the unhealthy air conditions. We are incredibly grateful to have all of his medical teams working together and closely monitoring his health as we navigate these challenging conditions.

One step at a time, and today was a good one. 💙

We made it back down to Pittsburgh for our special testing! …we should know in 2 weeks! 🤞🏻
07/13/2026

We made it back down to Pittsburgh for our special testing!

…we should know in 2 weeks! 🤞🏻

We just received BIG news!Bennett has finally been approved for the specialized testing we’ve been waiting for! This tes...
07/10/2026

We just received BIG news!

Bennett has finally been approved for the specialized testing we’ve been waiting for! This testing first had to receive FDA approval, and then Bennett had to be selected since it’s only performed at four facilities in the entire United States.

This testing is incredibly important because it will evaluate two very specific populations of Bennett’s T cells and B cells to help determine whether his PIK3CD gene variant is actually causing Activated PI3K Delta Syndrome (APDS) rather than simply being classified as a Variant of Uncertain Significance (VUS).

The samples will be sent to the Medical College of Wisconsin and Cincinnati Children’s Hospital, working alongside UCLA. This is a huge step toward getting the answers we’ve been searching for and, hopefully, opening the door to more targeted treatment options. 💙

Today’s adventure started at Hematology and ended in Wonderland. 💙After reviewing Bennett’s previous bloodwork, the team...
07/09/2026

Today’s adventure started at Hematology and ended in Wonderland. 💙

After reviewing Bennett’s previous bloodwork, the team decided to run an extensive panel—20 vials later, he was still smiling! They believe he may have a blood disorder, but they also feel many of the abnormalities could be related to APDS if we’re approved for the specialized testing. We’re hopeful that we’ll have more answers over the next week or so.

One of the highlights of the day was seeing our buddy Carl (phlebotomist), who made sure he got Bennett, kept the bond strong 💪🏼 , and made sure he was well-stocked with crackers and apple juice. It’s amazing how little acts of kindness can make such a big difference.

Afterward, we traded hospital walls for the Alice in Wonderland at Phipps Conservatory and Botanical Gardens. It was the perfect reminder that even on days filled with tests and waiting, there’s always room for a little magic, laughter, and making memories. 🩵🎩🐇

07/01/2026

A little update on Bennett:

His IgG levels are still in a good range however, they are trending down which means his weekly Hizentra is continuing to provide the antibodies his body needs but may not be quite enough. We cannot increase the dose of his infusion due to his Acute Kidney Injury and markers.

His recent labs did show that his T-cell and B-cell subsets have decreased since his last testing. At this time, his immunologist cannot make any changes and plans to repeat his T, B, and NK cell testing in six months to monitor for any progression.

The biggest update is on Activated PI3K Delta Syndrome (APDS). Bennett carries a PIK3CD gene variant, and his doctor is working with multiple institutions to find one that can perform the specialized functional testing needed to determine whether this variant is causing his immune system dysfunction.

If confirmed, APDS is a rare genetic immune disorder that can cause the immune system to work improperly. It increases the risk of recurrent infections, enlarged lymph nodes and spleen, autoimmune disease, lung damage, and certain blood cancers such as lymphoma. A confirmed diagnosis could also make Bennett eligible for a targeted treatment that addresses the underlying cause of his immune dysregulation—not just the symptoms.

For now, we wait. We are hopeful the right testing center will be available soon so we can finally get the answers we’ve been searching for. 💙

Today’s mailbox delivered something pretty incredible! 🏀❤️Bennett received a letter from John Starks, New York Knicks le...
06/25/2026

Today’s mailbox delivered something pretty incredible! 🏀❤️

Bennett received a letter from John Starks, New York Knicks legend and 1994 NBA All-Star, 1993 NBA All-Defensive Second Team selection, and 1997 NBA Sixth Man of the Year.

As a kid who absolutely loves basketball, this was such an exciting surprise! It’s amazing when someone who’s accomplished so much in the game takes the time to inspire the next generation. What a memory he’ll never forget! 🏀📬✨

Don’t mind the messy hair—we napped the whole way to Pittsburgh! 💙We’re back in Pittsburgh today! This trip is for Benne...
06/25/2026

Don’t mind the messy hair—we napped the whole way to Pittsburgh! 💙

We’re back in Pittsburgh today! This trip is for Bennett’s preventative blood work, and had a dental appointment as well.

One of the biggest takeaways from today is that, because of Bennett’s breathing challenges and his underbite, we’re taking the next step toward orthodontic treatment to expand his palate. The hope is that it will help create more space and improve his airway over time.

As you can imagine, Bennett is feeling a little anxious. Anything that involves his breathing is scary for him because staying in control of his breathing is something he thinks about every single day. We’re doing our best to reassure him, answer all of his questions, and remind him that we’ll be with him every step of the way.

If anyone has gone through palate expansion with their child—especially one with airway or breathing concerns—we’d love to hear your experience! 💙

Someone is NOT happy! 🫣Let’s hope this goes quickly and smoothly so we can get out of here and back home! Wherever we go...
06/23/2026

Someone is NOT happy! 🫣

Let’s hope this goes quickly and smoothly so we can get out of here and back home!

Wherever we go, so do the Mavs. 💙🏀

Even hospital trips require a little Mavericks representation—because true fans never leave home without their team!

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