Hope for Hailie

19/06/2026

For families living with ultra-rare conditions, studies like this are so important. Every appointment, test and piece of data helps researchers better understand the condition and will contribute to improved care, future treatments and cure.
We’re grateful to be here, grateful to the research team and hopeful that what is learned from Hailie and the other participants in the Natural History Study of MSMDS will help the entire ACTA2 community.

16/06/2026

The last two weeks have been a little stressful for Hailie as she was sitting her Junior Cert exams. Despite the many challenges and symptoms that come with living with MSMDS, she persevered and managed to complete nearly all of her exams. I am incredibly proud of the determination and resilience she showed throughout the exam period.

Today, we begin a brighter journey as we head to Boston to take part in a Natural History Study. While we are sad to have missed meeting Braxley and her family, who attended the study last week, we are looking forward to meeting a couple of other MSMDS.

We would also like to thank everyone who has supported us along the way. Whether you have donated, shared our story, offered encouragement, or simply followed Hailie’s journey, your support means the world to us.

This Natural History Study has been made possible largely through the fundraising efforts of MSMDS families around the world, who have worked tirelessly to help advance research into this ultra-rare condition. Every contribution, no matter how big or small, has helped bring us to this moment.

As we travel to Boston, we carry with us hope, not only for Hailie, but for every family affected by MSMDS. We are grateful to be part of a community that continues to push for answers, awareness and a better future💜🩵

There is still time to contribute to our campaign in June in hopes to get enough funding to have another family to participate in the Natural History Study.

https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness

10/06/2026

Today is MSMDS Day💜🩵

I’m sharing this beautiful video from the ACTA2 Alliance featuring the wishes of some of the children living with MSMDS, including Hailie.

As Hailie’s mum, these wishes remind us that behind every diagnosis is a child who wants the same things as every other child:opportunities, independence, family, friendship and a bright future.

Please take a moment to watch, share, and help raise awareness of MSMDS and ACTA2-related conditions.

And if you’re able, please consider supporting the Building a Legacy Together campaign to help fund much-needed research.

Today, we kindly ask you to:
💜🩵Learn about MSMDS
💜🩵Share this post
💜🩵Help spread awareness
💜🩵Support rare disease research and advocacy
💜🩵Stand with the MSMDS community
Together, we can make rare diseases less invisible.

Building A Legacy for the MSMDS Community Today is MSMDS Day, and...

06/06/2026

Thank you for sharing this, Angela❤️💜🩵

I'm so grateful that we met last year at the MSMDS conference. Reading your story reminds us that behind every diagnosis there is a family, a journey, hope and a mother's love that has no limits and can move mountains. It is not easy to revisit those memories and we appreciate you sharing them with all of us.

As the founder of Qué Pupilas Màs Grandes Tienes in Spain( What big pupils do you have) and a board member of the ACTA2 Alliance, Angela has done so much for the MSMDS families -gone far above and beyond in supporting families around the world, raising awareness and funds for research, sharing knowledge and helping parents navigate a diagnosis that so few people understand.

Your kindness, strength, energy and positive spirit have been such an inspiration to our family and to so many others. Most importantly, you are incredible mom to Jimena and David. Your love, dedication and determination shine through everything you do. It really does🫶

I truly believe that with advocates like you leading the way, raising awareness, supporting research, and bringing families together, we are getting closer to a cure.

Thank you for your friendship, advocacy, compassion and for everything you do for our MSMDS families. We are so grateful to have you in our lives❤️

31/05/2026

Back in April, I had planned to take part in the Women’s Mini Marathon but by the time I went to register, the entries had sold out. I lost motivation after that and my jogging plans quietly faded away.

Last week, a friend who can no longer participate generously offered me her entry, giving me a second chance to take part. Thanks Maxine🤗

This week hasn’t been ideal as I’ve been feeling under the weather with sinusitis, so I definitely won’t be chasing any personal bests. But that’s okay.
I’ll be there. I’ll show up.

Because this is about something bigger than running.

I’ll be taking part for Hailie and for our ACTA2 MSMDS family. Every opportunity to raise awareness matters and if being out there helps even one more person learn about MSMDS, then every step is worth it.

https://www.zeffy.com/en-US/fundraising/sirlyn-sandstrom-2

Here’s to showing up, doing what we can, and continuing to build a legacy together💜🩵

21/05/2026

We are sad to see Ben leave the research team at MGH. We will miss him and the kindness he has shown- he made our study days much more fun and memorable! Wishing him all the best for the future as he continue your journey into medicine.

07/05/2026

Promising progress and multiple approaches now being explored for ACTA2 MSMDS families 🩵💜 We need to keep the momentum going.

06/05/2026

Today brought a bit of mixed emotions.

We had been told in March after her last MRI that Hailie’s clot had fully resolved, but after seeing the neurology consultant today, it seems it is still there just much smaller compared to earlier scans. So a follow up brain MRI will be scheduled in a few months.

It’s frustrating when communication isn’t always clear and medical words can leave room for uncertainty.

But what matters most - it has reduced.
It is improving.

This journey is never straightforward. It’s full of ups and downs, clarity and confusion, hope and worry , sometimes all at once.

But Hailie keeps showing strength through it all. And so we keep going, one step at a time.

Hope for Hailie- always 💜🩵

29/04/2026

I want to share something that gives little perspective on Hailie’s life. Being a teenager is about testing boundaries, finding yourself and wanting to fit in. For Hailie, it’s no different but at the same time, it’s very different.

Hailie is a teenager, yet there are restrictions that most teens never have to think about. She is advised not to play contact sports, no rollercoasters, advised against getting piercings or tattoos. These aren’t just cautious choices, they are medical choices to minimise risks.

Recently, Hailie made a decision many teenagers make. She got a 2 new piercings on her ear. She didn’t ask and did it herself with a piercing gun and only told me later.

To some, that might seem like a small thing. Something normal. Something harmless.

But for Hailie, it isn’t.

Hailie has a mechanical heart valve, which means she is at risk of a serious infection called endocarditis. Because of that, her cardiologist has been very clear- no piercings, no tattoos. Even something as simple as an ear piercing can introduce bacteria into the bloodstream and put her valve and her life, at risk.

So now, for the next few weeks, we were told to watch closely for any signs of infection. We hope that everything will be okay.

And at the same time, we understand why she did it.

Because sometimes, she just wants to feel like a normal teenager.

That’s the hardest part of all of this not just the medical side, but the emotional one. The constant balance between keeping her safe and allowing her to feel like she belongs.

This is the reality for so many families living with complex conditions. The risks are real, even when the choices seem small.