Baby Jon’s Journey

02/27/2026

Baby Jon finally learned how to sign “more!” We’ve been working on this with his therapists for so long. So proud of him!!

02/20/2026

Oren, the surviving twin of Born Abel, passed away. Born Abel is very close to our hearts, they help so many people, they’ve put Jonny in a book, they’ve done articles about him.
Please consider helping support the family. Here’s some ways to support them.

02/09/2026

💜 February 8–14 is Feeding Tube Awareness Week 💜

This week we are honoring something that has truly saved our sweet Jonny’s life… feeding tubes.

A feeding tube is a medical device that helps people get the nutrition, fluids, and medications their bodies need when eating by mouth is not safe, not enough, or not possible. For many medically fragile babies and children, feeding tubes are not temporary. They are survival tools. They are the bridge between barely getting by and actually growing, healing, and living.

Jon started his journey with an NG tube, then moved to a G-tube, then a GJ tube, and now back to using an NG as needed. Each type of tube has been a lifeline for him, giving his body the support it needs to grow and stay healthy. Without these tubes, Jon would not be able to maintain his weight, stay hydrated, or take the medications that help keep him stable.

Feeding tubes saved his life.
There is no exaggeration in that.
They gave him the chance to survive when his body could not do it on its own.

They are not a “last resort.”
They are not a failure.
They are not something to be ashamed of.

They are life-saving and life-changing.

Because of feeding tubes, Jon has been able to gain weight when he was failing to thrive. He has been able to get the nutrition his brain and body need to grow. He has been able to stay out of crisis. He has been able to be here.

This week we stand with every child, adult, and family who relies on feeding tubes. You are not alone. Your tube does not define you, but it is a powerful tool that gives you more days, more strength, and more life.

Thank you for loving and supporting Jon and for helping us spread awareness that feeding tubes are not scary. They are hope. 💙

12/25/2025

Merry Christmas everyone!🎄🎅🏻🩵

12/25/2025

Merry Christmas!!
Thank you Victoria for the wonderful Christmas gifts for Jonny and his siblings!! They are wrapped and put under the tree from you!🎄🎁

12/20/2025

Sharing this because Strong Memorial Hospital / Golisano Children’s Hospital isn’t just a building to us, it’s where Jonny receives all of his care and where so many of the people who feel like family work every day. Our hearts are heavy tonight. Praying for the officers who were shot, for their families, and for every staff member and patient currently inside on lockdown.

12/19/2025

Quick update 🩵
All of Jonny’s siblings have been sick this week, and within the past hour Jonny has also spiked a fever.
His 4 year old sister, Whitney, is now on day 5 of ongoing fevers, with a peak of 105 tonight. She has been stable otherwise. She’s being taken in to see her doctor during the day as a precaution due to how long the fever has lasted.
Because of Jonny’s medical needs, we’re watching him very closely. If his fever were to rise like Whitney’s, he wouldn’t be able to manage it at home and would need to be hospitalized right away. We’re also keeping an eye on him for any other symptoms or an increase of the symptoms he already struggles with.
Please keep Jonny and his siblings in your thoughts and hope for a quick, gentle recovery for everyone. We’re so grateful for all the love and support 🤍

11/01/2025

Happy Halloween 🎃

10/05/2025

08/28/2025

Happy 2nd Birthday to our miracle boy, Jonny! 🎉💙 You light up our world with your strength, your smile, and your sweet spirit. You’ve taught us more about love, courage, and joy in just two years than we could have ever imagined. We are so proud of you and everything you’ve overcome. Today we celebrate you, our little warrior, our sunshine, our Jonny. 💛✨