A Miracle for Ella Rose

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A Miracle for Ella Rose Ella's fight against Vanishing White Matter Disease (diagnosed in July 2019), a type of Leukodystropy

Another advancement to   🩷Hope is on the horizon for VWM! 🧬 Thank you, Emma Kinderziekenhuis and Amsterdam UMC, for push...
22/08/2025

Another advancement to 🩷

Hope is on the horizon for VWM! 🧬 Thank you, Emma Kinderziekenhuis and Amsterdam UMC, for pushing the boundaries of research and giving families a reason to believe. 💜

Vanishing White Matter is een ernstige, ongeneeslijke hersenziekte die vooral jonge kinderen treft. Door genetische afwijkingen ontwikkelen hersencellen zich niet goed.
In het Emma wordt onderzoek gedaan naar een veelbelovende oplossing: gentherapie. 🧬 Met deze innovatieve aanpak hopen onderzoekers de ziekte te vertragen of zelfs te stoppen!

📲 Lees meer over het onderzoek via de link in bio.

21/08/2025

We’re proud to announce the launch of the Starblazer Awards, a new national recognition program from Make-A-Wish that honors wish alumni who are now making a difference in the world. These inspiring individuals show how a single wish can spark a lifetime of purpose. 💙

Know a wish alum who’s creating positive change? Nominate them today. Are you a wish alum transformed by the impact of your wish and making a difference for others?
Apply now at: https://wish.org/starblazer 🌟

Getting even more gorgeous with Brittney before bear bear school starts next week.🩷
20/08/2025

Getting even more gorgeous with Brittney before bear bear school starts next week.🩷

16/08/2025

Vanishing White Matter (VWM) Disease

VWM Families Foundation

More from an unforgettable day…🩷
14/08/2025

More from an unforgettable day…🩷

From the Bottom of Our Hearts, Thank You 💚⛳️We are overwhelmed with gratitude as we reflect on the 10th Annual Bonnie Ba...
14/08/2025

From the Bottom of Our Hearts, Thank You 💚⛳️

We are overwhelmed with gratitude as we reflect on the 10th Annual Bonnie Baublitz Golf Tournament for Ella. What started as a gathering of family and friends has grown into a long tradition of love, generosity, and unwavering support for our sweet girl.

To the families who love Ella like their own and pour endless time and heart into organizing this event — your dedication humbles us. Year after year, you rally together, not just to play a round of golf, but to make a real difference in her life.

To Hickory Heights Golf Club, thank you for opening your beautiful course and for being such a welcoming, generous host. You’ve given us the perfect place to come together, laugh, compete, and celebrate hope.

To the golfers, every swing, every putt, every laugh shared on the fairway means more than you know. You show up in the heat, in the spirit of friendship and purpose.

To our sponsors, your generosity fuels this event and keeps our mission alive. Your belief in Ella’s journey means everything to us.

And to our friends and supporters near and far — whether you played, volunteered, donated, or simply cheered us on, you are part of this success. You are part of Ella’s story.

Because of each of you, this year’s tournament was not only a huge success but also a powerful reminder that we are not walking this road alone. We carry your love and encouragement with us every single day, and it gives us the strength to keep pushing forward in the fight for a cure.

From the bottom of our hearts, thank you for many amazing years of hope, friendship, and love. Here’s to the next year — together. 💚

12/08/2025
Today is the day!! ⛳️⛳️
09/08/2025

Today is the day!! ⛳️⛳️

She’s all tuckered out and honestly, same, girl, same. 🩷We’re breathing a huge sigh of relief after a great annual check...
07/08/2025

She’s all tuckered out and honestly, same, girl, same. 🩷

We’re breathing a huge sigh of relief after a great annual checkup at CHOP today.

And the best news of all… through testing and exams, her team confirmed what we thought we were seeing these past two months since starting the drug trial: real improvements. 🙌🏼✨

Hope is growing, right alongside her. 💪

All checked in for her day of annual checkups at CHOP. 🩷
07/08/2025

All checked in for her day of annual checkups at CHOP. 🩷

We are so happy to share that Ella has had no side effects from her lumbar puncture this time! 🙌💗 She took it easy and r...
03/08/2025

We are so happy to share that Ella has had no side effects from her lumbar puncture this time! 🙌💗 She took it easy and rested most of yesterday, and today we were able to enjoy a little adventure at the zoo. 🦒🐧

Tomorrow we head back home to NC to get ready for our annual trip to the Children’s Hospital of Philadelphia checkup—always a big week capped off with her annual golf tournament and visits with family we haven’t seen in far too long due to all of our drug trial travels.

Feeling grateful for these good days and the memories we’re making along the way. 💕

Address


28078

Website

https://www.gofundme.com/f/v39m2v-a-miracle-for-ella-rose

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