A Miracle for Ella Rose

02/28/2026

🎉🎉🎉🎉 this is INCREDIBLE!

Baseline Visit Update 🎉

The MRI on the left was taken in November — the day Jada started the drug.
The MRI on the right is just three months later, in February.

Neither image shows a “normal” brain. We know that. We live that reality every day.

But the difference between them… is something we hardly have words for.

The dark areas you see represent fluid — spaces where myelin, the white matter that protects and insulates the brain’s nerves, had been lost. In diseases like leukodystrophy and VWMD, myelin doesn’t grow back. It only disappears over time. That’s the heartbreaking nature of neurodegeneration.

And yet… as best as the specialists can tell, Jada’s brain is slowly remyelinating.

If you understand anything about these diseases, you know how extraordinary that is. This does not happen on its own. VWMD does not reverse itself. Myelin does not simply regenerate without intervention.

And the strongest evidence of all?
Jada herself.

Her strength.
Her progress.
Her improvements.

There is no roadmap for this. No clear ceiling. We don’t know how much she will regain. We don’t know what her ultimate abilities will look like.

But if these three months are any indication… if this strength continues… then maybe there isn’t a limit.

Maybe this is just the beginning.

And we will keep believing, keep fighting, and keep praying that her story continues to defy what we were told was impossible. 🤍

02/24/2026

Another huge THANK YOU to the Hopewell Titans Baseball team for honoring Ella in such a meaningful way. Seeing her logo on the sleeve of your practice jerseys is something we will never take lightly. It means the world to our family to know she is being carried with you on the field.

And gifting Ella her very own jersey, with Ethan’s number and her name on the back, was such an awesome surprise. It’s a reminder that she is surrounded by a community that loves her fiercely. 💕

Ella continues to bravely fight Vanishing White Matter (VWM), and gestures like this give her strength. They remind us that she is not fighting alone. Your support lifts her spirit, encourages Ethan, and fuels our entire family in ways you may never fully realize.

She is already so excited for the season to start so she can cheer on every single one of you, proudly wearing her very special jersey. There’s nothing she loves more than being part of this team and this community, and she’ll be your biggest fan all season long.

Thank you for playing for something bigger than the game. Thank you for heart. Thank you for standing with Ella.

Let’s go Titans! 💙🩵⚾️

02/21/2026

We love reading all these INCREDIBLE updates from the 💕💕💕💕

Visit 7 Update 🤍

From the moment we walked through those hospital doors, something felt different. The good news just kept coming — and for the first time in a long time, it didn’t feel heavy being there.

Every nurse who hadn’t seen Jada in a while stopped in their tracks. They kept saying how incredible she looks. “Unbelievable.” “What a difference.” They couldn’t quite explain it — but they could see it. And as her mom, hearing that from the people who know her journey… it hits somewhere deep.

As most of you know, madam has never loved the hospital. It’s usually tears and tension before we even get through the doors. So I never imagined I’d say this… but yesterday she was genuinely excited to go and see her nurse friends. Nurse Kim was on call and when Jada saw her, her whole face lit up. That familiarity, that safety — it meant everything.

Jada used to be absolutely petrified of even the simplest checks. Blood pressure. Oxygen sats. It used to take everything in her. Yesterday? She calmly showed Nurse Kim where to put the cuff (on her leg), and held out her little index finger for the saturation monitor. No fight. No fear. Just quiet confidence. We all stood there a little stunned… like, who is this brave little girl?

Then came the blood draw. No child enjoys being poked. But this time, it was done in minutes. No tears. Just bravery. The kind that sneaks up on you and makes you swallow hard because you remember how far she’s come.

At our check-up, Dr was so impressed. She watched the videos of monkey sitting independently — something that once felt so far away — and rolling on the mattress. We’re one more fully unassisted roll away from Level 3. I don’t fully understand the levels yet, but Dr said it’s a very good thing… and she said Jada is doing so well. With emphasis on the SO. I had to look away for a second because the tears were right there.

She redid her TETRIS drawing — part of her baseline testing — and Dr said there are big improvements there too. The list just kept growing. In such a short space of time on this medication, the changes feel undeniable. They feel real. And for a mom who has sat through so many hard conversations… hearing progress spoken with confidence is overwhelming in the best way.

After assessments, we headed down to theatre for her MRI and lumbar puncture. Two hours under anaesthetic. The longest two hours — always. No matter how many times we do it, that waiting never gets easier. Mom and I tried distracting ourselves with what might have been the driest chicken mayo sandwich in history. We laughed about it… but really we were just counting the minutes.

And then suddenly, she was in Recovery. Safe. Breathing. Ours again.

And oh my goodness… she was hilarious. I’ve never seen monkey so silly after anaesthetic. She was genuinely upset that Nurse Rachael (who wasn’t even on call!) hadn’t said goodbye to her. The drama. Then she’d say something completely random and burst into this shrieky little giggle. Even the nurses were laughing with her. It felt light. It felt normal.

When we finally got home, all she wanted was her favourite chicken velletjie and garlic bread. She was so tired she was practically eating with her eyes closed. Brave girls still get exhausted.

Overall… Visit 7 was amazing. Truly.
Next appointment is our last… and then we’re coming home. 15 May. 🤍

To everyone who carries Jada in your hearts — thank you. The messages. The voice notes. The quick “good luck, Jada!” before appointments. You have no idea how much that lifts her. To take five minutes out of your day to remind her she’s loved and cheered on… it makes her feel so seen.

And it carries me, too. 🤍

02/19/2026

02/14/2026

Look at this girl go! Working so hard at therapy and yes, ever so slightly standing by herself not holding onto any thing (another first) to make those buckets!!! ❤️❤️🥹

02/14/2026

Ella is so happy that Cupid knew exactly what to bring her 🍫🍫🍫🍫😉.

Happy Valentine’s Day!

02/06/2026

Sharing an update on Sam’s improvement since starting the in hopes to . 💕💕💕🎉🎉💪🏼

We have been meaning to give an update on Sam for forever, but life has been hectic since starting the Fostigfigator clinical trial. We finally got a few minutes to breathe so here it is!

The last 6 months of 2025 were a whirlwind of trips back and forth to Boston (a 3 hour drive each way), but was absolutely worth it.

Last Christmas (2024) Sam was lethargic all of the time, he loves Christmas but wasn't interested in participating in any holiday traditions like he normally does. By the beginning of 2025, it was clear we were losing him. He wasn't eating at all by mouth and was almost entirely tube fed. He was losing the ability to use his left hand, which is the only one he has been able to use for years, meaning he couldn't really play with his toys, draw, use his ipad or the remote anymore. He was no longer interested in any of the things he used to love and didn't even want to leave the house. It felt very much like we were nearing the end. 

This Christmas was completely different. He was full of joy and excitement and pushed us all to continue all of our Christmas traditions. 

After starting the trial in June, Sam was almost immediately brighter, for the lack of a more descriptive term, and slowly some of his abilities have actually come back. The changes haven't been huge, but these little improvements have made an enormous difference to his quality of life. He is able to use his left hand again so can use the remote, draw and use his iPad without too much help (some help will always be needed!). He is much more alert and back to his old, perpetually happy self. His speech is clearer and faster, and his appetite is back, gaining nearly 20 pounds in only 6 months (great for him, not so much for Mom and Dad!). We are so happy we were able to get Sam into the trial and with changes we have seen, we feel like we have our Sam back.

But of course....it isn't all smooth sailing, Sam's scoliosis has progressed rapidly over the last 18 months (due to VWM and rapid growth spurts - scoliosis was unavoidable and inevitable), and he now has a 130 degree curve in his spine and is in a lot of pain, so our next hurdle is dealing with that, which is a post in itself.

01/27/2026

Last week, CNBC launched CNBC Cures, a powerful new initiative led by Squawk Box anchor Becky Quick. Created to raise awareness for rare diseases and improve the lives of the 30 million people living with them, the initiative is inspired by Becky’s daughter Kaylie and her own rare disease journey. While the team expected interest, the response has been extraordinary.

Seeing the rare disease community on such a public stage is incredibly exciting and long overdue. We encourage you to read the article linked in stories and follow along as CNBC Cures works to build a community that breaks down barriers, expands treatment options, and reduces the isolation so many families face.

Together, visibility leads to change.

01/26/2026

Incredible update on some of our friends in the same drug trial. 💕

And through every step of this journey we hold Reed in our hearts. 💚

It’s been a while since I’ve shared an update on how some of the VWM research is going. As many of you know, we traveled with Reed out to Utah roughly two months before his passing. Receiving the email inviting us to screen for the trial was truly a dream come true—something we had worked toward for so many years. But God had other plans, and deep down, we knew it.

Reed’s VWM had progressed too far, and his body simply wouldn’t have been able to handle the travel. God knew that, and He gently guided us toward that decision, knowing we would need those final weeks to soak up every moment with our boy. While our path looked different than we had hoped, so many of our VWM friends are now on Fosigotifator and are doing incredibly well. I wanted to share this update so you know the fight isn’t over—and that we are continuing to move closer to ending this awful disease.

A little more about Fosigotifator (FGT): it is referred to as an “activator,” meaning it increases the activity of the EIF2B protein complex, helping brain cells better manage stress and function more normally. It works by activating the EIF2B gene complex—the exact location of the mutation that causes VWMD. Doctors describe it as essentially holding the complex together so it can function properly, even though it remains mutated. For most patients, there are no side effects, and it is taken easily once daily.

The image included in this post shows Ella’s MRI scans. The scan on the right is from April, and the scan on the left is from August 2025. The darker areas represent regrowth, while the lighter areas show where the brain was previously damaged or lost. In the newer scan, there are significantly fewer light/void areas and clear signs of improvement.

Of course, neither scan resembles a completely healthy brain. The black areas represent fluid that has filled spaces where myelin (white matter) has disappeared. An MRI is essentially a water-based image, and while it has limitations, it can still tell us a great deal. As best as doctors can tell, the brain is slowly remyelinating. If you know anything about neurodegenerative diseases or leukodystrophies, you understand how extraordinary this is. Remyelination does not happen on its own with VWMD—myelin is only lost over time.

The most compelling evidence, of course, is the functional improvement people are seeing. There’s no way to know what the ceiling will be—how much function may return or what abilities will look like long term—but we continue to pray and hope for ongoing progress each day.

Additionally, FGT appears to be doing an excellent job protecting against decline caused by fever and infection. Recently, one of our friends contracted COVID, ran a 104-degree fever, and experienced a severe seizure. While no one wants to test the limits of this medication, the doctor said it was the highest fever and most intense seizure he’s seen in a patient on FGT—and the child weathered it remarkably well. We’ve also heard of another little girl on the medication who fell and hit her head on a tile floor and is doing fine. All signs point to FGT doing its job in protecting these children.

All of the children in the trial are doing well, with most seeing similar results. Improvements appear to be more dramatic in younger children. This drug is currently on a special FDA fast-track approval process, and there is hope that the formal approval process could begin as early as this year.

Our Journey with Jax - Vanishing White Matter Disease
Jax has been on the trial drug since October. From his mama: He’s been experiencing episodes of flushing, stiffening, and crying—which is notable because he rarely cries. He also sometimes seems dizzy when sitting up, and his skin appears more fragile, resulting in additional pressure sores. While very few patients have experienced side effects, Jax and a few others who have seem to be further along in the disease process and on multiple medications. This has raised the possibility of medication interactions. Their neurologist is working to wean some medications to see if that helps.
The most important question, of course, is whether there are improvements—and his mama believes there are small but meaningful ones. His oxygen levels have been more stable, he may be moving his arms slightly more, and he appears to have better head control. At their neurology appointment, the doctor felt confident that Jax was tracking her with his eyes. They are hopeful that once the side effects are addressed, improvements will become clearer. They will travel back for another appointment in January, which will include a follow-up MRI.

A Miracle for Ella Rose
Ella has been on FGT since April 2025, and her progress truly feels miraculous. Before the trial, she was unable to use utensils due to tremors and coordination challenges. Recently, she fed herself and finished an entire cup of mac and cheese for the first time. Even more incredible, her appetite is stronger than ever—she has gained more weight since starting the trial than she has in years.

Her physical therapy walking tests show remarkable improvement:
6-Minute Walk Test
• Sept 23, 2024: 158 ft
• Sept 15, 2025: 246 ft

30-Second Walk Test (average of 3 trials)
• Apr 10, 2025: 16.1 ft
• Sept 15, 2025: 35.3 ft

Hunter
Hunter has been on Fosigotifator since November and is doing amazing. His mama recently shared that Hunter climbed onto the couch by himself. This may sound like a small thing—but it isn’t. For nearly a year, Hunter had lost the ability to do something that once came effortlessly: crawling up to sit with his family. Hunter will soon return to Boston for his three-month follow-up, which includes another MRI. Many families are seeing white matter regrowth at this stage, making this appointment especially significant and hopeful.

Jada Foundation
Jada and her family traveled all the way from South Africa to the U.S. and have been asked to stay for approximately eight months. The transition has not been easy, but her mama is doing an incredible job, and each day seems to be getting a little lighter. Jada has been on FGT for seven weeks and is thriving.
From her mama: Jada has a new laugh—a deep, joyful giggle that feels like it comes from somewhere new. She’s gained 4kg after years of fighting for every gram, which feels nothing short of miraculous. She looks healthy and radiant. Her speech has blossomed—new words, full sentences, and a voice we once feared we might never hear. Every word feels like a victory. Jada’s next appointment is at the end of February.

Archer’s Fight Against VWMD
Archer reminds me so much of Reed. He has been on FGT since last summer and has shown incredible progress. His parents report that his speech is returning, he can now use his left arm and hand to pick things up, and he eats at every mealtime while working on more challenging textures. He uses his stander for several hours a day, his vision has improved, and his brain lag has significantly decreased. More than anything, he is happier than he has been in a long time. Archer’s next MRI is scheduled for this summer.

01/24/2026

Friends, GREAT NEWS! Jada is also beginning to see some of the awesome change we have seen in Ella due to the 💕💕💕💕

It’s been a while since we’ve shared a proper update, and I think maybe that’s because life has felt so full lately. Full of change, full of emotion, full of moments that stop you in your tracks.

The last update we shared was about our move. We’re now living in a beautiful little coastal town called Winthrop, in an apartment right on the beachfront. It still doesn’t feel real some days. Waking up to the ocean feels like God’s quiet way of reminding us that we are being carried, even in unfamiliar places.

Change is not easy for Jada. So that first week after the move was hard. She withdrew. She slept a lot. She lost her spark for a moment, and as her mom, that part hurts in a way words don’t quite reach. But knowing everything she’s been through, I also knew she just needed time. And true to who she is, it took exactly one week… and then my girl came back to herself.

And oh my word—she came back shining.

She has this new laugh now. A deep, joyful giggle that comes from somewhere new. I catch myself just watching her, trying to memorize it, wishing I could bottle it up and keep it forever.

It’s been 7 weeks on FGT, and I don’t say this lightly when I say: my girl is thriving. She’s picked up 4kg—after years of fighting for every gram, this feels nothing short of miraculous. She’s healthy, glowing, and yes… a little pork chop now 😄 More of her to love, and I love every bit of it.

But the weight gain isn’t even the biggest change.

Her speech… her words… her voice. She’s using vocabulary and putting sentences together that I never thought I’d hear. Every new word feels like a small victory, a reminder of how much is happening inside her. And of course, there’s that spark of teenage sass too. The other night I asked her to sit back properly in her wheelchair, and she looked straight at me, smiled, and said “No.” And honestly? I laughed through tears.

These changes might look small from the outside. But in our world, they are huge. Life-changing. Hope-restoring.

We did have a scare recently when some of her pancreas and liver markers came back high. I won’t pretend I didn’t panic—those are two things we never take lightly. But we’re so grateful to say her numbers are already dropping back to baseline, and she’s doing well. Relief doesn’t even begin to describe it.

We’re almost at the 3-month mark here in the USA. Some days it feels like we’ve been here forever, and other days it feels like we only just arrived and we’re already halfway through. Time moves strangely when you’re living between appointments, progress, prayers, and hope.

We’ve got a long break now until the end of February before we see the doctors again. And for once, we’re allowing ourselves to breathe. To rest. To just be a family. Even though—true to form—Jada has managed to make best tjommies with the nurses at every visit along the way 💛

We are so proud of her. So grateful. And quietly hopeful in a way that feels new.

Thank you for walking this journey with us 🤍

01/24/2026

💕💕💕💕💕 We love the Mavericks!

A Charlotte-Mecklenburg Schools middle school was nationally recognized on Thursday for its efforts to provide inclusive sports to students with disabilities.

Francis Bradley Middle School in Huntersville was one of eight in North Carolina to earn a National Banner Award from the Special Olympics, and the only North Carolina school to earn a national award from ESPN recognizing the school’s Unified Sports program.

Bradley’s Unified Sports program pairs students with and without disabilities to participate together in sports such as soccer, basketball, track and more.

“They build friendships, they build bonds, they can travel all over the state, all over the world and create bonds and friendships with people from everywhere,” said the program’s co-lead, Tomeka Curry, who is also an Exceptional Children’s teacher at the school.

Eighth-grader Zymere Bell said he loves running. His mother, Nekosha Reid, said the program helps ensure her son feels included in the school community and gives him a chance to compete.

Full story: WFAE.org
📝: James Farrell
📸: James Farrell