Uncompressed: Seanna's Journey to Life 2.0

21/06/2026

To all the Super Hero Dads- we love you and see you 🌻💜

13/06/2026

Many ticks here..

Separate diagnoses don’t always mean separate biology.
ME/CFS, hEDS/HSD, MCAS, and dysautonomia/POTS get diagnosed separately, but they overlap heavily in symptoms and very often are diagnosed in the same person. That part is well documented.

What’s not well understood is whether they share underlying biology. These labels were largely built around symptom clusters, not around biological mechanisms. The mechanisms that keep coming up (immune dysregulation, autonomic dysfunction, mast cell activation, neuroinflammation, connective tissue and energy metabolism problems, endothelial dysfunction) are rarely exclusive to just one diagnostic label and often seen across conditions.

And this is just one example cluster. Plenty of other conditions could be swapped in here.

10/06/2026

I came across this guideline for patients with MCAS undergoing surgery or anaesthesia and when reading it thought, "I wish we'd had this sooner."

Many people think MCAS is just allergies, rashes, or hives, but mast cells release over 1,200 mediators that can affect virtually every system in the body. Symptoms can include pain, GI issues, cardiovascular symptoms, neurological symptoms, fatigue, and much more.

This is especially relevant for those with EDS, where MCAS is frequently part of the picture.

Looking back on Seanna's journey, better awareness and planning around MCAS before and after procedures may have helped us ask different questions and prepare differently. Hopefully sharing this resource helps another family feel more informed and supported. 💜🌻




https://www.mastcellaction.org/assets/_/2026/05/19/90466204-daca-4847-b38e-b0e135654667/final-anaesthetic-and-surgery-guide.pdf?v=1&fbclid=IwVERFWASWG0BleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEem0FyUQtXewxxlnokzqAYVG7DyI0tskfum07uOKc47XuqOU03mEsxhbx8Ecs_aem_FWvm4Q6roIW4LFRPO4k34A

31/05/2026

I waited until the very last day of EDS Awareness Month to watch Complicated - The Movie, a documentary on Ehlers-Danlos Syndrome and the impact it has on the lives of a handful of patients and families.

It was great seeing some of the EDS greats being interviewed, including Lara Bloom from the The Ehlers-Danlos Society, Cortney Gensemer, PhD from The Norris Lab, and Dr Clair Francomano.

What hit me hardest wasn’t the medicine. It was the families.

One mom was labelled abusive because she wouldn’t stop looking for answers for her children. She was accused of doctor shopping. Imagine that - being criticised for trying to find a doctor willing to do their job.

At one point she had to hand custody of her children to her husband so they wouldn’t be placed in foster care. For almost two years she could only see them for a few supervised hours at a time, until a judge eventually ruled the entire case was frivolous. It gives one Take Care of Maya vibes.

I felt that one deep in my chest.

When you live in the world of rare disease, you’re often told that if you hear hoofbeats, think horses. The problem is that some of us are actually raising Zebras.

Seanna has the most common form of Ehlers-Danlos Syndrome, Hypermobile Ehlers-Danlos Syndrome (hEDS). She also lives what many call the trifecta: hEDS, POTS and MCAS. We’ve done our fair share of “doctor shopping” too. Not because our bank account loves collecting specialist invoices like Pokémon cards, but because when your child is suffering, you keep looking until someone EVENTUALLY listens.

We’ve heard the whispers. We’ve seen the raised eyebrows. I am not the only one who’s face has subtitles. We’ve felt the sting of Munchausen by Proxy accusation, called bad parents for choosing to remove a kidney. Yet the reality is that families living this every day often become the experts. Not by choice, but by necessity.

The documentary reminded me how often rare disease families are forced to fight two battles. The disease itself and the disbelief that comes with it.

If you’d like to watch Complicated, it’s currently available on Apple TV and can be rented for about 40 bucks. That’s less than a cappuccino these days and probably a better investment.

My hope is that one day medicine moves beyond automatically assuming every hoofbeat is a horse. Because sometimes it really is a Zebra.

And sometimes that Zebra is desperately ill, standing right in front of you, waiting for someone to believe them. 💜🌻🦓

24/05/2026

The Verimark Ad

Ever since Seanna’s surgery in the US, whenever I see people, the question is always the same:

“How is Seanna doing?”

My answer has usually been, “The surgery was successful. The healing trajectory is in place.”

And medically, that is true.

Every Abdominal Vascular Compression Syndrome that once dominated her life has been addressed. The surgeries worked. The blood flow issues that stole years from her childhood have been corrected.

Yet the last few weeks have been telling a very different story.

Recently, while chatting to one of those genuinely kind souls at Kaden’s school, the usual question came up again.

“How is Seanna?”

For the first time, I admitted what I had been avoiding saying out loud.

Although we have healed every AVCS, Seanna is now showing signs of severe brain inflammation in the form of PANS.

For those unfamiliar with it, PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) is a condition where infection or immune dysfunction triggers inflammation in the brain, particularly affecting areas responsible for behaviour, emotions, movement, and cognition. Symptoms can include severe OCD, anxiety, panic attacks, sensory issues, emotional instability, motor and vocal tics, dystonia, sleep disturbances, nightmares, cognitive decline, food restriction, and a host of other neurological and psychiatric symptoms that can appear suddenly and dramatically.

She then asked why I hadn’t posted an update.

The honest answer is that I simply haven’t had the emotional bandwidth.

People want the happy ending. They want to read the book, navigate the plot twists, celebrate the victory, and close the final chapter knowing everyone lived happily ever after.

In our case, it’s the Verimark ad.

But wait… there’s more.

I strongly suspect our current trials and tribulations package stems from the relentless hospital acquired Klebsiella Pneumoniae infections she endured last year while seeking the MALS diagnosis, particularly the one that was ignored until it became a month-long ICU admission with sepsis.

Many of you will remember that admission.

It was the one where Seanna spent her 15th birthday in hospital.

Looking back, it feels as though that infection changed the trajectory entirely.

What followed was severe OCD, escalating anxiety, relentless nightmares, vocal and motor tics, dystonia, sensory challenges, and symptoms that continue to grow longer than any parent ever wants to write down.

The past few weeks created the perfect storm for the perfect flare.

A difficult antidepressant changeover combined with two separate anaesthetic procedures to finally replace her NJ tube successfully seems to have poured fuel onto an already raging fire.

Thankfully, we have one thing that has never changed.

Her doctor.

The same doctor who has walked beside us from the very beginning.

The same doctor who celebrated our victories and stood shoulder to shoulder with us through every setback.

The same doctor who has advocated relentlessly when doors closed and options disappeared.

In a healthcare system where appointments are often measured in minutes and patients can feel like numbers, his dedication remains something truly extraordinary.

His commitment has once again gone far beyond what could reasonably be expected.

Through persistence and sheer determination, he managed to secure an appointment with a neurologist whose diary is effectively closed for the remainder of the year.

That appointment is this week.

We are expecting that hospital admission may follow.

As I sit outside in the autumn sun writing this, I honestly don’t know how I am going to do this again.

During Mental Health Awareness Month, I will say this without embarrassment:

I now experience panic attacks when walking into hospitals.

Years of operating in crisis mode have consequences.

Years of watching your child suffer leave scars that don’t show up on scans.

Yet here we are.

Again.

Showing up.

Putting one foot in front of the other.

Doing the next right thing.

Because that’s what parents do.

We remain hopeful that we are finally looking in the right direction. If this truly is inflammatory brain disease, then perhaps we have finally found the missing piece of a puzzle that has already stolen far too much from an incredible young woman.

As always, thank you for continuing to walk this road with us.

Your messages, support, and kindness carry us more than you will ever know. 🌻💜

10/05/2026

To the moms, dads, grandparents, siblings, and caregivers doing this life with medically complex kids.

Happy Mother’s Day. Truly.

Some of you spent today in hospital rooms instead of restaurants. Some of you packed meds before coffee. Some of you know medication schedules better than your own birthdays. Some of you haven’t slept properly in years because your nervous system never fully switches off. You can spot a flare before the monitors do. You count the spoons.

You became nurses, researchers, advocates, pharmacists, coordinators, medical aid/insurance fighters, record keepers, and safe places. Not because you wanted to. Because your child needed you to.

This life is strange. One minute you’re discussing blood flow, compression syndromes, feeding intolerance, medication reactions, and surgical options. The next you’re trying to celebrate tiny wins like eating half a rice cake, walking around the block, or surviving a week without an ER visit.

People see the appointments. They don’t always see the invisible part:
The fear.
The hypervigilance.
The grief.
The guilt when you’re exhausted.
The constant calculations running in your head every second of every single day.

And still, you keep going.

You learn how to smile while carrying things most people could never imagine. You learn how to advocate in rooms where you’re dismissed. You learn how to stay soft while becoming unbelievably strong.

Watching your child suffer changes you permanently. But so does watching them fight.

Seanna has taught me more about resilience, courage, humor, and grit than anything else in my life ever could. She keeps showing up despite everything her body throws at her. And like so many rare and chronic illness kids, she carries things no child should ever have to carry.

So today is for every caregiver sitting beside hospital beds, managing medications, fighting gaslighting, researching at 2am, comforting terrified kids and even teens before procedures, celebrating small victories, and holding entire families together while quietly falling apart themselves.

You are seen.
You matter.
What you do matters.

And to the chronic illness moms specifically:
The world may never fully understand the weight you carry.
But other medical moms do.
Immediately.

Happy Mother’s Day to the fiercest people I know. 💜🌻

05/05/2026

Although hypermobility is a hallmark of hypermobile Ehlers-Danlos syndrome, people with hEDS can experience a wide array of symptoms ranging in severity that affect the entire body.