Princess Tillie Mae fighting Sanfilippo Syndrome

14/04/2026

Peace is a moment where nothing hurts and nothing is missing 💖

10/04/2026

Hi, I started this fundraiser, Tille-Mae’s Carnival of Hope , on GoFundMe and it would mean a lot to me if you’d be able to share or donate to it.

Tillie has recently turned 18, a milestone that is incredibly meaningful as she is bravely li… Rubie Dean needs your support for Tille-Mae’s Carnival of Hope

10/04/2026

Shared on behalf of Team Tillie Mae💖

We are pleased to announce
The Carnival Of Hope 🎪

We’re reaching out to ask for your support for a very special event Tillie Mae’s Carnival of Hope.

Tillie has recently turned 18, a milestone that is incredibly meaningful as she is bravely living with Sanfilippo Syndrome. She is now exceeding her life expectancy, which is something truly worth celebrating 💖

Sadly, Tillie missed her birthday celebrations this year as she was poorly in Great Ormond Street Hospital, so we are creating something magical in its place a carnival-themed day inspired by all the birthdays and even the prom she never got to experience.

We are incredibly grateful to Jackie and Sarah at The Red Lion, Woolmer Green, who have kindly donated the venue to make this event possible.

This event is not only about celebrating Tillie, but also about:
✨ Raising awareness of Sanfilippo Syndrome
✨ Supporting the MPS Society
✨ Raising funds for essential equipment to support Tillie’s day-to-day life

We are currently looking for kind businesses and individuals who may be able to support us with:

🎁 Raffle or auction prizes
🎪 Carnival-style stalls, props, or equipment
🎠 Fairground-style rides or entertainment
💖 Donations or sponsorship
📣 Social media shares to help spread the word

Every contribution, big or small, will make a huge difference not just to the event, but to Tillie and others affected by this condition.

If you would like to support, donate, or get involved in any way, we would love to hear from you.

You can also follow Tillie’s journey and stay updated here:


Thank you so much for taking the time to read this and for any support you can offer it truly means the world.

09/04/2026

We have something special happening that you are all welcome too!

🩷Saturday 27th June 🩷

Watch here for further details🩷

05/04/2026

We’re home 🩷

Tillie Mae’s been helping to make desert - mini egg cheese cake.

Happy Easter 🐣 to all our followers.

03/04/2026

Tillie Mae, I can think of nicer places for our mini breaks, these hospital stays are becoming a regular pattern.

Our girlie is picking up after sadly not fully getting over another infection. 6 days of antibiotics and she’s finally looking so much better, now to work on building fluids and feed up then we can break free out of here and STAY home

Let’s see if we can get home to enjoy some of the Easter break 🐣

30/03/2026

Here we are again…

It’s exhausting in a way that’s hard to even put into words.

Watching Tillie Mae go through so much is just heartbreaking 💔

Every time we start to feel like we’re getting back on our feet, something knocks us down again.

We’ve never had so many hospital stays… it feels relentless, like there’s no real break to just breathe.

But we keep going.

We stay strong.

We hold onto hope that better days are coming.

We will get our girl better — it’s just taking time 🩷

At this point, we’ve been here so often we’re practically on first-name terms with everyone… 5-star treatment, just not the kind we’d ever wish for !

24/03/2026

We’ve had so many messages and calls today after seeing the beautiful little Leni on Good Morning Britain. And all I could think was… she’s so much like our Tills at that age.

That’s the thing about Sanfilippo syndrome they are all so alike.

It only feels like yesterday we started this journey. But at the same time, it feels like a life time ago.

Seeing newly diagnosed families breaks me in a way I can’t even explain… because nothing has changed. We are still no further forward with treatments for this devastating condition 💔

Our trial changed Tillie Mae’s life. It gave her time. It gave her better health. It gave us moments we never should have had to fight so hard for.

And yet families today are still walking out of that hospital room with the same unbearable words ringing in their ears…
“Take her home and enjoyed every precious moment you have with her”

How do you go home after hearing that?
How do you hold your child and not feel your heart shattering?
How are parents still being asked to just “make memories” knowing their child may never reach their teenage years?

How is this still happening?

This has to change. It has to.

We need newborn screening — something that was being fought for when Tillie Mae was first diagnosed, and still isn’t here today.

We need funding. Real funding. For gene therapy and treatments that we already know can make a difference — that can give these children more time, more life.

Why are families still being left behind? Why are we still having to beg for what should already exist?

We have come so far with research, and yet we are being held back — held back by a lack of support, a lack of urgency, a lack of action.

But we will not be silent.

We are stronger together. We are louder together. And we will not stop fighting — for our children, for the families just starting this journey, and for the ones who deserve so much more than this cruel disease 💙

Good Morning Britain MPS Society UK, here for those with rare diseases

11/03/2026

Andddddd it just keeps giving. Our girl needs a break. After a week back to school doing a few hours in the mornings to help her slowly get back into some kind of routine she’s knocked back again, this time with CDIFF and 2 infections in her gastrostomy, no doubt picked up from hospital and the crazy amount of antibiotics she’s had over the last few months.

Back in our local on Monday to start MORE antibiotics.

Thankfully we were listened to and it was agreed we can continue to care for her at home with the community team and GP.

Where’s that light at the end of this very long tunnel????

08/03/2026

To all my medical mums
I see you ❤️
I hear you❤️
I am one of you❤️
The strongest women I know 💪🏼

Today is International Women’s Day. In families facing serious childhood illness, the strength of women is extraordinary. The reality is that mothers often carry a huge part of the burden when a child becomes seriously ill. The statistics tell a difficult story:

• Women are more likely to step away from work to care for a sick child.
• Women experience higher levels of stress and long-term health impact during a child’s illness.
• Women are more likely to face financial consequences as caring responsibilities grow.

This doesn’t take away from the love and commitment of fathers, many stand shoulder to shoulder through it all.

But the evidence shows that women are often the ones whose health, careers and financial security take the greatest hit.

What makes this even harder is the contrast.

When a baby is born, mothers are rightly supported
with mental health checks, physical recovery support, maternity protections at work, and financial help.

But when a child becomes seriously ill later in life… that structure of support largely disappears.

Yet the emotional, physical and financial impact on families can be just as profound. Behind hospital doors, treatment plans and sleepless nights, there are countless mothers quietly carrying enormous weight for their children and families.

Your strength knows no bounds. But strength should never be mistaken for something the system can rely on instead of providing proper support.

Because no mother should have to choose between being beside their child in hospital and keeping their job, their income, or their health.

That is why change is needed.

Not sympathy.
Not kind words.

Real support.
Real protection.
Real recognition of the reality families face.

Today we celebrate the women who hold families together in the hardest moments imaginable. And we commit to building a system that stands beside them when they need it most.

Happy International Women’s Day.

18/02/2026

And there’s that smile 🩷 — how we’ve missed our gorgeous girl’s smile.

We’ve been quietly working so hard to help build Tillie back up after such an awful time. It hasn’t been easy, and there have been some incredibly tough moments, but we are making progress.

Trust our girl — she will prove to everyone just how strong she truly is.

The transition to adult services has, sadly, been a real let-down, and everything has felt very heavy lately. Right now, we’re choosing our battles carefully and focusing our energy on the support that can genuinely bring positives to Tillie’s life. It’s been a scary and uncertain time, with very little feeling straightforward. We’re hoping that now Tillie is home and starting to make progress, things will finally begin to fall into place.

What a crazy few months it’s been. We are so grateful for the wonderful people in Tillie’s life who continue to support her and believe in her.

I always knew our girl could do it 💕

Next big step getting back to school 🩷

18/01/2026

Andddddddd we’re home. Not quite worked out what has caused all these complications.

Tillie Mae has had 4 different types of gastrostomy tubes/buttons, 4 general anaesthetics, MRI, 2 Ct scans, 4 ultra sound scans, 15+ attempts to get cannulas in, 1 PICC line, 2 anaphylactics , 27 seizures episodes (apparently not seizures), 6 weeks on TPN , in bed for 8 weeks, weight lose and now urine retention that urology team at GOSH are refusing to support her with and far to many allergic reactions on top of the lost count of antibiotics she’s had.

How incredibly brave is our girl 🩷

So we have now been discharged from Gosh and move over to adults to queens square UCLH.

We have to wait for the community nursing teams to come out and meet Tillie and train us up on all the medical care Tillie Mae needs. It’s feeling like we have been left on a cliff side as we wait for these referrals and pray there is a smooth transition over to these teams.

It’s so hard to not feel disappointed that this should have been a straightforward procedure for a feeding peg and to watch how much Tillie Mae has had to go through.

Would things have been different if she hadn’t turned 18 in the middle of all this? Who knows but we will now pray there’s no more complications and we can adjust to this new normal. Let’s do this Team Tillie 💪🏼💙