Hope for Hailie

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Hope, awareness and a future for Hailie with MSMDS

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.

17/04/2026

Bye bye hospital
We’re so grateful to be heading back home after a bit of a scare. Hailie has been cleared of sepsis and endocarditis after undergoing several tests.

Our hearts are also with beautiful Saoirse and her family, who passed away two years ago yesterday. Forever in our hearts 💫🦋

14/04/2026

Back in ER again to be admitted - another hurdle to overcome.
Ruling out sepsis/endocarditis. The waiting, the unknown… it never gets easier.

Taking it one step at a time.
Please keep Hailie in your thoughts and prayers 💜🩵

27/03/2026

Reading this brought me straight back to Boston 💜🩵
The strongest warriors. The best people to be around-the sense of safety, the quiet understanding… it really meant everything🩵💜

28/02/2026

💜 Rare Disease Day
Who would ever think that children can have strokes?
Stroke is rare in children.
MSMDS is rare.
But for MSMDS families like ours, the risk is very real.
Hailie has had a stroke. We just don’t know when.

After her MSMDS diagnosis in 2020, Ellen Hostetler from Professor Dianna Milewicz’s team in Texas suggested she should have a brain MRI. She was referred in Ireland, but we were told the wait could be many years because it would require general anaesthesia. Private clinics declined due to her age when I enquired.

So a couple of weeks later, during a summer trip to Estonia, I contacted a hospital there. When they heard she recently got MSMDS diagnosis, they arranged MRI within two days and without GA or sedation because of the risks anaesthesia can bring.

I remember sitting there thinking this was just another precaution. That there would be nothing there.

But the scan showed old scarring/gliosis - meaning she had already had a stroke along with other distinctive changes characteristic of MSMDS.

I felt the ground disappear beneath me.
How could that be possible?
How did we not notice? How much had she already endured in just nine years of life?

Most likely it happened in her first months of life, when she was already critically ill in hospital. A silent stroke. A quiet injury.
That is what rare disease can look like, things happening that no one expects nor sees-
So we stay vigilant.

behind every rare diagnosis is a child who has already fought battles most will never understand💜🩵

Address

8 Cooley Road
Dublin
D12

Website

https://www.acta2alliance.org/, https://www.zeffy.com/en-CA/fundraising/sirlyn-sandstrom-2

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