Super Scarlett's Story

16/06/2026

We did everything right. It still went wrong. 🙄

Most people see the holiday photos. What they don’t see is the weeks and months of planning it takes to make a trip possible for a child like Scarlett.

We provided JetBlue with detailed information about Scarlett’s needs in advance, including her specialist seating system and boarding requirements. We did everything we were asked to do.

Yet we were left waiting on an aircraft lift for 20 minutes because staff apparently didn’t know they needed to open an aircraft door 🤯 which then meant Scarlett wasn’t boarded first as agreed, meaning I was left carrying my 23kg daughter down a crowded aircraft aisle while passengers were still boarding. Staff appeared unfamiliar with equipment they had been told about beforehand, and we were given conflicting instructions throughout. 🙄

The result was stress, discomfort and indignity for Scarlett and our family before our journey had even begun.

What was particularly telling was that members of the special assistance team at Edinburgh Airport were themselves shocked by what they were seeing and expressed concern about how our family was being treated.

When we complained, JetBlue acknowledged our experience but concluded there had been no service failure.

And that’s the problem.

Too often, disabled families are told that procedures were followed and boxes were ticked, even when the real-life experience falls far short of dignity, accessibility and inclusion.

We don’t expect perfection. We expect preparation, understanding and a willingness to make things right when things go wrong.

This isn’t just about one flight. It’s about a world that still expects disabled children and their families to fight for things that should already be in place.

I’ll keep sharing these experiences, not because I enjoy complaining, but because this is the reality for so many disabled families.

JetBlue may not consider this a service failure. We do.

And Scarlett deserved better. 💖

07/06/2026

After reading the article about a couple who terminated a pregnancy because there was a chance their baby could have Down syndrome, I found myself thinking about Scarlett.

The world often talks about disability as if it’s the worst thing that could happen to a child.

But then I look at Scarlett.

A little girl who loves books, music and adventures. A little girl with the most wicked sense of humour who will absolutely laugh at you if you stub your toe. A little girl who is non-verbal, a full-time wheelchair user and completely dependent on others for her care.

And yet, she brings more joy to our lives than she’ll ever know.

Has disability been hard? Of course it has. Has it been heartbreaking at times? Absolutely.

Would I take away her pain, struggles and challenges if I could? In a heartbeat.

But would I take away her?

Never.

Because Scarlett is not her diagnosis. She is not a list of things she can’t do. She is a little girl who loves fiercely, laughs loudly and makes the world a better place simply by being in it.

The biggest challenges Scarlett faces aren’t because she’s disabled. They’re because society wasn’t built with disabled people in mind.

The inaccessible places. The assumptions people make. The lack of support. The endless battles families face for services, equipment and opportunities that others take for granted.

That’s the problem.

Not Scarlett.

Her life has meaning. Her life has value.

And if you ask me, the world doesn’t need fewer people like Scarlett. It needs more acceptance, more understanding and a society that sees disabled people for who they are.

Because Scarlett’s life is every bit as valuable as anyone else’s. 💜

♿️

05/06/2026

You know what’s really convenient?

Being able to walk from the far end of the car park. 😉

Leave disabled bays for those who don’t have that option.

💖♿️

🚨 Public Service Announcement 🚨

Just a reminder: being lazy isn't a disability.

Disabled parking spaces aren't VIP parking for people who can't be bothered finding a proper space. They're there for people who genuinely need them.

Life is hard enough without people getting in the way of daily routines...people deserve to go to work, school, days out, shopping ect..without having to gain extra miles and becoming more stressed IN THEIR DISABILITY VEHICLE to find another space ❗

So next time you're tempted to park there, ask yourself

"Am I disabled, or am I just being a t**t?"

If the answer is the second one, keep driving.
Thanks for reading 🤬 🚗💙

02/06/2026

🪩🎧 ARE YOU A DJ? OR DO YOU KNOW ONE? 🎧🪩

Right, we’re going to try shameless begging… but with glitter. ✨

As some of you know, we’re currently putting the finishing touches to Scarlett & Tommy’s Wheelie Big Dance-a-thon, a 24-hour challenge taking place from 7th to 8th August. We’re almost ready to share all the details, but there’s just one thing we’re still hoping to find before the big announcement… an amazing DJ who might be willing to donate a couple of hours of their time and help keep the dance floor moving.

Are we actually capable of haunting your dreams and cursing your internet connection? Probably not. But wouldn’t you rather help two gorgeous children in need than gamble on the comfort of your next jobby? We thought so. 😜🪩👻

The truth is, we really do need help.

Life for Scarlett and Tommy isn’t easy. Every day involves equipment, care, therapies, appointments and adaptations that most families never have to think about. This fundraiser is about helping us continue to provide the things that give them comfort, opportunities, inclusion and the best quality of life possible.

The Wheelie Big Dance-a-thon is about so much more than fundraising. It’s about two amazing children, two families coming together, and a friendship that has grown through shared experiences, challenges, laughter and determination. ❤️

So if you’re a DJ, know a DJ, have a cousin who was a DJ in 1998 and still owns some decks in the loft, or know anyone who could help bring some party vibes for a couple of hours, please get in touch.

And if you can’t help directly, a share could put this post in front of exactly the right person.

Most of the amazing support we’ve received has come from a friend of a friend of a friend seeing a post and saying, “I know someone who can help.”

From the bottom of our hearts, thank you. ❤️

🪩✨💜💙

31/05/2026

Three weeks ago, while we were in Colorado for Scarlett’s stem cells, we visited Infinity Neurodevelopment for a 3-day intensive.

I’ll be honest—after seeing their slick social media, we wondered if the experience would live up to the hype.

We were NOT disappointed.

From the moment we arrived, Scarlett was welcomed like a little celebrity (rightly so! 😆). The clinic has such a calm, positive atmosphere, and every member of the team was incredibly knowledgeable, passionate and welcoming.

Infinity takes a different approach to therapy, focusing on the brain rather than just the body. Through a combination of developmental exercises, primitive reflex integration, laser therapy and EM-field stimulation, they work to encourage neuroplasticity—the brain’s ability to build new pathways and connections.

One area they focus on is primitive reflexes—automatic movement patterns we’re all born with that should naturally integrate as we develop. When these reflexes remain active, they can affect movement, posture, coordination and regulation. Much of Scarlett’s programme was designed to help address these retained reflexes and support more efficient movement patterns.

Although we only attended for 3 days (most families do 2-week intensives), we noticed a significant reduction in Scarlett’s muscle tone after each session. Her arms, legs and neck moved more freely, and she seemed much more relaxed overall.

But the biggest thing we gained wasn’t what changed in 3 days—it was the confidence we left with.

As a parent of a disabled child, we’re constantly faced with therapies, treatments and miracle claims. What impressed us most was that nothing was oversold. Every question was welcomed, the science was explained clearly, and we left with a plan we could continue at home.

Because stem cells aren’t a miracle cure on their own—the real work happens afterwards.

We have absolutely no doubt that Infinity is somewhere we’d love Scarlett to return to in the future.

Ironically, this is actually one of the therapies that we weren’t able to access using funds from Scarlett’s Just4Children account, so we had to cover the cost ourselves. Having now experienced it firsthand, we’re incredibly grateful that we were able to make it happen. 💖

At around $550 per hour, it’s a huge financial commitment, but experiences like this remind us why we keep pushing forward.

Every donation, fundraiser, share, comment and message of support helps us continue exploring opportunities that could make a difference for our little superstar. 💖

Thank you to Dr Andrew, Emry, Dr Julie, Jillian, Becky and Lauren for making us feel so welcome.

This isn’t goodbye…

It’s “See you soon.”

To Infinity… and beyond! 🚀✨

30/05/2026

Updated Pool review: absolutely stunning... accessibility review? A whole different story 👀

Scarlett had the BEST time swimming this morning 🐠
but when you’re visiting a brand new public pool, “brand new” should mean accessible too.

We visited a couple months ago but thought we would go again and see if ANY of the “issues” we faced last time had been addressed 😬

Full review coming soon because families like ours shouldn’t have to lower expectations just to go for a swim 💁🏻‍♀️♿️

Although... I won’t be able to comment on the new hydrotherapy pool because I still haven’t actually managed to book it 🙄🤦🏻‍♀️

The fun was 10/10 though 😆💖

♿️

29/05/2026

Top guys 💙
Angela’s Kitchen - Belter’s Snacks always fundraising for Scarlett with my aunty Joan Spence yummy caramel shortcake 😋 💖

03/10/2025

H O M E ❤️

We had the BEST time away 💖 stem cells, Movement lesson and Hyaluronidase injections all went well and without any hiccups this time 😀 made more memories with my favourites 🥰
Home to a late birthday celebration for Olivia 🎂
all slightly jet lagged but so worth it 🇺🇸

Special shout out to for adapting Scarlett’s play suits 😍 so easy to wear with added PEG access and poppers for easy changing 🙌 Thanks Sam 🥰

21/09/2025

Stem cells done ✅
Movement lesson intensive starts Monday…
Tomorrow we avoid Trump 😬🇺🇸😂
pool day it is ☀️💖