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

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11/04/2026

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My girl. ❤️

We have done so much together in your 16 years.

We’ve moved houses, changed schools, made new friends, crossed oceans and faced battles that most people will never understand. And through every change, every setback and every mountain, you’ve found a way to keep going.

I remember the day we had to consider a wheelchair. My heart broke a little, until I saw the independence it gave you. Then came the big seizure that paralysed your entire right side. You had to learn to smile again, use the toilet again and hold things in your hands. And girl, did you fight!

And then Boston. Our biggest adventure yet. The clinical trial that gave us hope and another reason to keep fighting.

Until you’ve walked beside us, you’ll never truly understand what it takes to live this life. The sacrifices, the uncertainty, the heartbreak and the endless hope.

My beautiful 16-year-old girl, I will never pass up an opportunity to spend another moment with you. Your happiness and quality of life will always come first.

I promise to make your days beautiful and your nights full of love. I never want you to close your eyes without knowing just how deeply this mother of yours loves you.

I have fears, doubts and a million thoughts about what tomorrow might bring. But I’ll never let my storm get you wet.

With God guiding me, I’ll keep finding the beauty in every day, and on the days you can’t see it, I’ll find a way to show you.

You and me, my girl. Through every battle, every adventure and every tomorrow.

I’ve got you. Always. ❤️

Beauty & her Beast 💕
10/31/2026

Beauty & her Beast 💕

Book Character Day for Ella and her aide at school. 🧁
10/30/2026

Book Character Day for Ella and her aide at school. 🧁

📣 Excited for Ella to possibly join this new program coming to our area! They are still looking for kiddos to fill their...
10/15/2026

📣 Excited for Ella to possibly join this new program coming to our area! They are still looking for kiddos to fill their teams. Please reach out to them if interested! 📣

10/09/2026

🎉 4th grade Buster Moves Color Run = success! 🎉

A huge THANK YOU to her school PT , her aide Jackie, and all her friends for helping and cheering her onto the finish line! 🥇

Barnette is the BEST! 💕

10/08/2026

We need your help this Friday! The Miracle League is looking for a few more buddies for our games on Friday, October 9, from 5:30 to 8:00 pm.

Buddies partner with our players during the game, helping them hit the ball and run the bases. No experience is needed. All it takes is a positive attitude, a little energy, and a willingness to cheer on some amazing athletes. You will be amazed at how much joy a single evening can bring, for the players and for you.

10/07/2026

Cognitive or psychiatric problems are more common in people with late-juvenile, adolescent, or adult-onset VWM …

We finally got to review Ella’s MRI images from Boston and wanted to send everyone an update since we know so many of yo...
10/07/2026

We finally got to review Ella’s MRI images from Boston and wanted to send everyone an update since we know so many of you have been waiting and asking. 💜

The great news is that radiographically, Ella’s MRI remains stable! With VWM being a progressive disease where decline is typically expected, stability is really good news.

On some of her previous MRIs we saw significant improvement in her brain and white matter. This time we didn’t see that same dramatic change, but we also didn’t see decline. Because this is a drug trial, we really don’t know what to expect moving forward, whether her imaging will continue to remain stable or whether we could see more improvement in her white matter again.

But the REALLY exciting part is that clinically, we have seen some of the biggest improvements in Ella yet. ❤️ She is stronger, has more endurance, her balance and standing are improving, her speech is clearer, she’s putting more words together, and she continues to make gains.

So while the pictures of her brain are stable, Ella herself continues to improve, and that feels huge.

We went into this trial hoping to slow the disease, buy her time, and protect what she had. To be able to say today that her MRI is stable while she continues to make clinical gains is something we are incredibly grateful for.

We don’t know what the next scan will show or what comes next, that’s the reality of being part of a drug trial. But for now, this is really good news, and we are celebrating it! 💜

Thank you all for loving her, praying for her, and always checking in on our girl. We wanted you guys to hear the update from us first. ❤️

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Huntersville, NC
28078

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