KobeStrong VOGM Journey

07/18/2025

The truth is… unless they’ve been here — unless they’ve walked this road of beeping monitors, medical jargon, sleepless nights, and fragile hope — they just won’t understand.

They won’t understand the ache of leaving the hospital without your baby.
They won’t understand the strength it takes to sit by an incubator day after day, praying for one more ounce gained or one less tube.
They won’t understand how something as small as a diaper change or a kangaroo cuddle can mean the world.

And that’s okay.

Because this journey has made us part of a tribe no one asks to join — but one full of warriors, miracles, and love beyond measure. 💙

To every NICU parent out there — I see you. I feel you. You’re not alone.

06/12/2025

Mommy and Kobe on “cure/close” date 6.11.2021, 6.11.2022, 6.11.2023, 6.11.2024, 6.11.2025 (last 3 wearing his Boston Children’s Hospital tshirt always on this day)

06/12/2025

Oh man! What a joyous day. Jody was one of two of Kobe’s primary NP’s. I’m certain he would not be alive if it weren’t for her instincts which were always spot on. The way she stood up for him and sometimes in the way of what everyone else thought was right, is incomparible. Dr Orbach and Chris and Jen ( because even though she was on leave she was still keeping up every step of the way) the nurses his other NP Eileen. My goodness the moving parts and all the sacrifices was finally showing up and showing out. The miracle of Kobe will NEVER be lost on me. Happy “CURE” date Kobe. While I know a Cure isn’t really possible with VOGM, a closed/stable one is always the goal and today four years ago, we finally heard the words.

03/25/2025

Four years little one.

Happy One week to this sweet baby boy and happy due date day. We love you more than words can even describe but God knows our hearts for you ❤️❤️

03/25/2025

Four year anniversary of Kobe’s second brain surgery.

03/18/2025

My post didn’t go yesterday so I’m reposting today but Kobe turned 4 yesterday on St. Patrick’s Day!
“My little leprechaun turns 4 today. Words cannot begin to express the joy his little life gives me. For obvious reasons, he had to fight for his life for a very long time, and only the few people close to us, know that he still fights daily. His little smile though, and his voice, and hearing him form sentences and say Dr Orbach’s name and just live this wonderful life brings it all into perspective. He has been earthside for FOUR whole years with a rare condition that has brought us more friends and extended family than I can count. VOGM may have been a devastating diagnosis but I feel so blessed to have been given the responsibility of caring for him and for bringing a purpose in my life to help other kids like him. I work closely with the VOGM support network and he inspired my small business that’s growing by the day. Blessed is an understatement. This is 4🍀!!!!!”

02/24/2025

4 years ago we had the pleasure of meeting Dr Orbach via Zoom, after sending our info to Neuro NP Jen Judge and getting much needed information that geared us solely towards Boston. I will never be able to fully articulate the sense of comfort that immediately came over us when talking to him but the emotion was so very real. The wonder of him and his team is never lost on us. Just days later we left for Boston and never looked back.

02/06/2025

I hope you never…

I hope you never have to sit in a hospital and hear a diagnosis for your child.

I hope you never have to hold them down for regular exams and bloodwork,

or watch them be carried off into surgery by a stranger.

I hope you never have to fight for their right to exist,

And live in fear that they won’t.

I hope you never have to beg your child to breathe,

or even imagine what that’s like.

I hope you never know the pain of watching your child’s pain,

the exhaustion of watching their fight,

or the strength that is needed when they are weak.

I hope you never…

but if you do,

I hope you know you that you can,

and that you are capable.

I hope you never have to…

but if you do,

I hope you know that you are not alone.

Happy Rare disease month you guys.

10/21/2024

Posting Kobe’s campaign again. We are $80/250 which is our goal! You can walk from
Anywhere and the funds go directly to kiddos like HIM with VOGM. Just snap a pic of you and your family walking virtually to support Kobe, when you sign up in the drop down menu click KobeStrong Campaign.

We’re thrilled about our 5th Annual Walkathon! Join us in achieving our $35,000 goal to assist VOGM Warriors in accessing crucial brain surgery from specialized experts. The Vein of Galen Malformation Support Network is dedicated to raising awareness about VOGM, a rare brain AVM. With October bein...

10/14/2024

The walkathon is back! It costs $20 per adult to register! The walkathon is virtual and you can walk anywhere to raise awareness for VOGM! For those who have supported our Kobe please consider walking for him. We have a team for KobeStrong. When you register please select KobeStrong’s team from the drop down menu.

We’re thrilled about our 5th Annual Walkathon! Join us in achieving our $35,000 goal to assist VOGM Warriors in accessing crucial brain surgery from specialized experts. The Vein of Galen Malformation Support Network is dedicated to raising awareness about VOGM, a rare brain AVM. With October bein...

10/08/2024

New York, you owe me absolutely NOTHING. I had the absolute honor and privilege of attending the Great Galen Gala hosted by the Vein of Galen Malformation Support Network, Inc. It was a surreal experience being in that room with all of these amazing people connected by this rare condition. I got to finally meet Cristina Ashley who was the first story we read that led us to the network. Lena Spisak commented first on my crazy post and she quickly put me in touch with Jen Judge. We quickly had our consult, talked with Marlene Happek Brochu got a travel grant, and after talking with Dr Orbach, we were in Boston receiving care from him and Christopher Isibor When I was asked to help with the event I not only felt honored, but I had a peaceful feeling. It was also such a pleasure to finally meet D.J. Martin and his wife. I know now after attending and really hearing from Dr Berenstein about the first cases, that I needed to attend. I needed that extra insight on just how fortunate we all are to be sharing space and time together. We really become a family with this diagnosis and I fully understand just how much work still needs to be done.

10/01/2024

I’ll be sharing soon about the walkathon and how you can participate to support Kobe and other babies like him! I’ll also be offering shirts for all the KobeStrong VOGM Journey walkers!!!!!

October is ! Did you know vogm isn’t as rare as they once thought, it occurs in approximately 1/58,000 children! October is packed full for us as we host our inaugural and our 5th annual international walkathon!
All proceeds go to help a VOGM child get to life saving brain surgery! We are so grateful for all our supporters and our VOGM mammas who are making this gala a success! Big shoutout to our gala cochair Darby and all our other mamas behind the scenes making this possible! Join us in our efforts, Links in our bio!