Simon’s ACTA2 Journey

08/05/2026

07/03/2026

Thank you to The Tale of Riley Rabbit for sharing this very poignant post.

Anticipatory Grief

Anticipatory grief—sometimes called preparatory grief—is the kind of grief that begins before a loss actually happens.

Most people associate it with the time leading up to the death of someone who is seriously ill. But anticipatory grief isn’t limited to death. It can also appear in moments when life changes in ways we didn’t choose—serious illness, disability, war, divorce, or any situation where the future suddenly looks different than the one we imagined.

For many families walking the Rett syndrome journey, this kind of grief becomes a quiet companion.

It’s a strange space to live in.

Your heart feels like it has already stepped into the future—imagining losses that may or may not come—while your mind keeps trying to pull you back into the present.

And the nervous system feels the strain of holding both at the same time.

Focus becomes harder.
Sleep stops behaving like sleep.
Your mind runs scenarios when you should be resting.

Sometimes you feel hyper-alert, like your body is always waiting for the next emergency.

Other times the exhaustion hits so deeply that even simple things feel heavy.

This isn’t weakness.

It’s the nervous system trying to carry too much uncertainty for too long.

There’s also a strange duality in anticipatory grief.

You are still showing up.

Still parenting.
Still working.
Still loving your spouse.
Still advocating.
Still lifting, feeding, managing medications, navigating appointments, and learning medical language you never asked to learn.

Life keeps moving.

But somewhere inside you, there is a quiet voice asking questions about the future.

And that internal tension creates something psychologists call cognitive dissonance—holding hope and fear at the same time.

One of the hardest parts of anticipatory grief is that it’s mostly invisible.

No one has died.
Nothing outwardly catastrophic has happened.

From the outside, life looks normal.

Which means the world often doesn’t realize you’re carrying grief already.

But the body knows.

The mind knows.

And the heart definitely knows.

That’s why giving this experience a name matters.

When we call it anticipatory grief, something important happens.

We remove the shame.

We understand why our nervous system feels stretched thin.

We recognize that loving someone deeply—especially someone medically fragile—means sometimes living with both gratitude and fear in the same breath.

For parents like us, wisdom comes slowly.

Over time we learn something important:

The future will take care of itself.

But the people we love need us present today.

So we breathe.

We show up.

We love the child in front of us.

And we keep walking the road—one day at a time.

If you’re living with anticipatory grief right now, you’re not alone.

Your feelings are real.
Your nervous system is doing its best.
And this kind of grief deserves compassion, language, and support.

No one should have to carry it alone.

07/03/2026

Truly awesome.

07/03/2026

The fundraising this June was our first time hosting this kind of event and we never EVER imagined the amount of generosity we would encounter. From the bottom of Simon’s medically complex heart, and from the many dozens of other children living with MSMDS, thank you to every family, local organization, donor, and supporter who helped make this possible. You are helping turn our first major research contribution into reality.

Together, we are building knowledge, hope, and legacy. 🩵💜



If you’d still like to participate in the June campaign, you can donate today:
https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness

We couldn’t be more grateful for our community🥰

During June, so many of you came together with one shared goal: to help bring specific treatments for MSMDS and ACTA2-related conditions faster.

Through every event, every donation, every company gift, and every small contribution, we’ve raised $17,687 toward our $30,000 goal for the ACTA2 Natural History Study, and that is through our Zeffy pages alone!

Thank you to every family, local organization, donor, and supporter who helped make this possible. You are helping turn our first major research contribution into reality.

Together, we are building knowledge, hope, and legacy. 💜



If you’d still like to participate in the June campaign, you can donate today:
https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness

06/27/2026

Today we are wearing sunglasses for our fellow children and families living with ACTA2-related conditions, including MSMDS, an ultra rare condition with less than 100 known cases worldwide.

Some ACTA2 patients live with severe light sensitivity, vascular complications, aortic disease, strokes, or other serious symptoms. Many families are still searching for answers, and many doctors have never heard of these conditions.

I’m sharing this to help more families find the community, resources, and care they need.

Follow ACTA2 Alliance to help connect more families and support research.



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

06/25/2026

How are you doing finding your three allies for Saturday’s fun🕶️?

We are just going to leave you with some clear steps so you can join us, put on some shades, and share a selfie on Facebook and Instagram.

Adding a donation link makes it even better! Saturday is all about raising awareness and giving one last push to the Building a Legacy Together campaign.

Let’s see how far we can get when we move as one 🫶

📣HOW TO PARTICIPATE
🌕Donate $5 here: https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness
🌖Put on sunglasses.
🌗Take a photo or selfie.
🌘Share it as a post or story on Facebook, Instagram, or LinkedIn.
🌑Copy and paste the text below 👉Tag 3 friends after: “I challenge you to do the same 🕶️:”
🌚Add the donation link.

COPY & PASTE TEXT (Also in the comments, to make it easy to copy.)

Today I’m wearing sunglasses for children and families living with ACTA2-related conditions, including MSMDS, an ultra rare condition with less than 100 known cases worldwide.

Some ACTA2 patients live with severe light sensitivity, vascular complications, aortic disease, strokes, or other serious symptoms. Many families are still searching for answers, and many doctors have never heard of these conditions.

I’m sharing this to help more families find the community, resources, and care they need.

I challenge you to do the same 🕶️:


Follow to help connect more families and support research.



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

Let’s finish June strong... and cool 😎

06/19/2026

We bought a fabric strap to see if it helps Simon keep his sunglasses on 🤣🫣

Most of you have donated waaay more than $5 - thank you! We are hoping to see you in your sunglasses to spread awareness!

There are fewer than 100 diagnosed cases of MSMDS worldwide, but there are likely many, many more children out in the world struggling with confusing medical complications. The more we can get the word out about this genetic mutation, the more likely we are to bring answers to those parents and doctors trying to connect the dots.

See you on International Sunglasses Day!!!

In 7 days, we are taking over International Sunglasses Day for MSMDS and ACTA2... and we want you with us! 🕶️

On June 27th, join and to help more people hear about MSMDS and ACTA2-related conditions.

It’s easy:

🕶️ Put on your coolest sunglasses
📸 Take a photo or selfie
🏷️ Use , and
🔗 Share the campaign link
💜 Add a $5 donation if you can

You can donate, share, or do both. The point is to help MSMDS and ACTA2 reach more people.

‼Your mission for this week: find three allies to join you on June 27th.

We are now close to $13,000 raised in the U.S. toward our $30,000 goal for ACTA2 and MSMDS research. And after the big hit this campaign was for ACTA2 Alliance UK, we didn't want to miss the fun 😎

Let’s use these final days to get closer!

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

See you behind the shades 😉

#

BTW! We left in the comments some pills of information you can coy and paste to add to your posts/stories for 👇 To help you raising awareness easily!