💛 A Life + Benny Update 💛

Some days, it feels like I’m juggling a thousand things at once — managing Benny’s medications, tube feedings, therapies, and those hard days when his little body does not tolerate his food well. I am so thankful for our nurses! On top of day to day life with other kiddos, work, and household chores, But even in the middle of it all, we’re still standing strong — holding onto faith, hope, and the belief that God’s not done writing Benny’s story. 🐝

Many of you have been asking, “What’s next for Benny?”

Right now, we’re praying over the next big step — specialized stem cell treatment. There’s currently a 2-year waitlist, but Benny’s doctor recently reached out about a clinical trial in California that he may qualify for but they need Genetic testing an a ton of stuff to even qualify, and it seems super heavy to accomplish all of that on top of everything else. I’ve started the long process of paperwork and applications (and praying through every single page ).

 What is stem cell therapy?

It’s a treatment that uses a patient’s own cells to help repair or regenerate damaged areas of the brain and body. For children like Benny — who suffered a hypoxic brain injury — it’s shown incredible potential in improving muscle tone, motor skills, and overall development.

The cost for this treatment is $10,000, and our rehab doctor is encouraging us to explore it sooner rather than later. In the meantime, we’ve also committed to another two-week intensive therapy this May, and we’re hoping to save toward both opportunities.

To be honest, financially we work ourselves to the bone to make sure Benny gets every chance to thrive, and our girls live a normal life — but I’m also just… tired. 🥹 Between that and a busy season with my business, we’ve decided to pause the long travels until January and simply live in the moment this holiday season. 

Locally, we’ll continue seeing the TOPS Therapy Center in Andover twice a month, along with Benny’s weekly vision, OT, PT, speech, and chiropractic therapies.

And while all of that is going on, we’re still having to hold the girls who did this to Benny accountable. The system is SO broken — they were supposed to begin paying restitution after getting out of jail, yet one is three months behind and the other a month behind. When I called to report it, I was told, “Well, they are paying, but their court costs will be paid off first and then you will begin getting payment.”

So the court will get their money before Benny sees a dime — which could take nearly 10 months.

It’s not about the amount ($125 total between the two a month won’t change our lives) — it’s about the principle. My son deserves every bit of acknowledgment and accountability for what he’s endured. I’ve already requested the court hearing be transcribed, and I won’t stop advocating for him.

Through it all, we’re trusting God’s timing and direction — for continued healing, and for what’s next. Thank you for continuing to pray for Benny and for lifting our family through every season. Your love and support mean more than you’ll ever know. 💛🐝