08/05/2026
Friends, family, and supporters of Braxley the Brave… this is going to be a long post, but this is a BIG announcement that I’ve been dreaming of hearing and I hope you’ll join me in my excitement.
When I opened this announcement, I sat there and cried.
Not because Braxley has a treatment today.
Not because we’ve reached the finish line.
But because, for the first time, the finish line feels real.
When federal funding for rare disease research was being cut, I won’t lie… I was terrified. It felt like years of progress could disappear overnight. As the mom of a little girl with an ultra-rare genetic disease, you already spend every day wondering when the next complication will come, when the next scan will change everything, or when the next phone call will bring news you aren’t ready to hear. You live with the constant feeling that the other shoe could drop at any moment.
So to read that the VESSEL Project, led by Dr. Patty Musolino and her incredible team at Massachusetts General Hospital, has been awarded up to $25.8 million in funding…
The relief is hard to put into words.
For just a moment, I wasn’t thinking about fear.
I was thinking about hope.
The science behind what this team is doing is truly groundbreaking. Over the next five years, they’ll be working to develop a way to deliver gene editing directly to the cells of the blood vessels to treat MSMDS and other rare vascular diseases at their genetic cause—not just the complications they create.
For a disease as incredibly rare as MSMDS, this kind of investment is almost impossible to comprehend. Just a few years ago, I don’t know that any of us would have believed we’d be reading an announcement like this.
But I also want to be honest.
This is not a guarantee, but it is the first major step.
There is still so much we don’t know. We don’t know if this therapy will ultimately work. We don’t know how long it will take. And because MSMDS is such a heterogeneous disease, we don’t know whether one treatment will work the same for every patient. Every child experiences this disease differently, with different levels of complications and severity.
There is still an enormous amount of work ahead.
Which is exactly why we can’t stop now.
If anything, this is the moment to push even harder.
Research doesn’t end because a grant was awarded. Families are still traveling across the country for natural history studies. Researchers still need data. Advocacy organizations still need support. Clinical trials still have to happen. Treatments still have to prove they are safe and effective before they ever reach children like Braxley.
Every fundraiser. Every donation. Every share. Every conversation. Every person who chooses to stand beside our family continues moving this mission forward.
To everyone who has supported Braxley over the last three years… this moment belongs to you, too. ❤️ You have helped carry us through some of the darkest days imaginable, and you’ve helped build the momentum that made announcements like this possible.
I cannot tell you how hopeful I feel today.
Not because our journey is over.
But because, for the first time, I can truly picture where it might lead. I have always felt hopeful, but now it feels concrete.
And maybe the part that makes me emotional more than anything else…
I cannot wait for all of you to see this through with us.
You’ve watched Braxley fight through open-heart surgery as a baby. You’ve celebrated birthdays, prayed during hospitalizations, followed our trips to Boston, supported our fundraisers, and loved our little girl as if she were your own.
One day, I hope you’ll also be here to celebrate the day we can say that together… we made it.
That this community watched a little girl grow up with an ultra-rare genetic disease until the day the mutation that caused it could finally be treated.
That’s the update I’m dreaming of writing.
Today isn’t the finish line.
But today, for the first time in a very long time…
it feels like we’re finally running toward one. 💜
