Baby Jon’s Journey

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North Tonawanda, NY
Baby Jon’s Journey

Baby Jon is a fighter facing a rare unknown genetic disorder, waiting for diagnosis.

11/01/2025

Happy Halloween 🎃

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. 💛✨

08/13/2025

We have some HUGE news to share! 💙

I know it’s been a little while since I last posted, but we have some incredible updates about our warrior boy.

Over the past couple of months, Baby Jon has made amazing progress — he started eating and drinking everything by mouth, and we haven’t had to use his GJ tube at all. And then… yesterday, his GJ tube fell out. His stoma closed up almost immediately, so we called the on-call doctor, and they had us come in today to see his GI doctor to check his weight and decide if surgery was needed to put a new tube in.

Well… his weight is up again, and his GI doctor made the call to leave the tube out completely. That means… NO MORE FEEDING TUBE!!! 🎉

This is absolutely huge for him, and we couldn’t be more proud. His GI doctor did send us home with some NG tubes and supplies, just in case he gets sick or stops eating, so we can avoid the ER and schedule surgery if needed in the future. But for now, we are celebrating this incredible milestone!

Our strong, determined boy is thriving — one step (and now, literally first steps!) at a time. 💪💙

Address

North Tonawanda, NY

Website

https://linktr.ee/babyjonsjourney, https://www.gofundme.com/f/stand-with-baby-jon-aid-his-recovery?utm_campaign=man_shar

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