Princess Tillie Mae fighting Sanfilippo Syndrome

Princess Tillie Mae fighting Sanfilippo Syndrome Tillie Mae is a incredible 18 years old and has a rare genetic condition called Sanfilippo MPS111 Type A. She is brave ,strong and resilient 🩷

Join us on our journey of ups and downs in the crazy world of Sanfilippo. This group has been set up as a way to keep everyone update on Tillie Mae progress, fundraising and events that are happening. It is also the perfect place for us as a family to say Thank you to all those people who have overwhelmed us with there love and support and not to mention generous donations! Donations can be made via www.gofundmetilliemae
To find out more about the disease please visit www.mpssociety.co.uk

20/06/2026

How incredible Sanfilippo syndrome is being recognised, shared and spoken about. One day there just maybe a treatment so no other child has to suffer the way Tillie Mae and the other sf kids have 💙 take the photos make the memories and never take a day for granted.

Our girlie got front page of the local paper 🥰 Not long now until her big celebration 💖
17/06/2026

Our girlie got front page of the local paper 🥰
Not long now until her big celebration 💖

School sports day, a little different this year but still Tills did AMAZING 🌟
17/06/2026

School sports day, a little different this year but still Tills did AMAZING 🌟

Great article in this weeks Welwyn Hatfield Times 💖 A massive thank you to the lovely girls organising the Carnival of H...
15/06/2026

Great article in this weeks Welwyn Hatfield Times 💖

A massive thank you to the lovely girls organising the Carnival of Hope and all the wonderful donations for our Tills. We hope to see as many of you there as possible as we come together to celebrate just how incredible Tillie Mae truly is. ✨💕

After 7 months I finally managed to return to my girl guides group last night. Oh how good did it feel to be back! There...
03/06/2026

After 7 months I finally managed to return to my girl guides group last night.

Oh how good did it feel to be back! There was pizza making, frog making finished off with birthday cake to celebrate the lovely Gill’s birthday 🎂 so so lovely to see everyone and be back with a wonderful group of people. 💖

💜🎪 TILLIE MAE’S CARNIVAL OF HOPE – JUST WEEKS TO GO! 🎪💜As we count down to Tillie Mae’s Carnival of Hope on 27th June, w...
02/06/2026

💜🎪 TILLIE MAE’S CARNIVAL OF HOPE – JUST WEEKS TO GO! 🎪💜

As we count down to Tillie Mae’s Carnival of Hope on 27th June, we wanted to take a moment to say a huge THANK YOU to every single person who has supported us so far.

The kindness, generosity, raffle prizes, donations, shares, messages and offers of help have been truly overwhelming. It means more than words can ever express.

This event is so much more than a fundraiser. It’s a celebration of our beautiful Tillie Mae’s 18th birthday – a milestone we are so incredibly grateful she has reached. Many of you know that Tillie spent her 18th birthday in Great Ormond Street Hospital, meaning she missed out on the celebrations she deserved. Carnival of Hope is our chance to give her a day filled with love, laughter, memories and community.

We’re now entering the final few weeks and would love one last push. If anyone is still able to:

✨ Donate a raffle or auction prize
✨ Make a monetary donation
✨ Sponsor part of the event
✨ Share this post with friends and family
✨ Invite people along on the day

Every contribution, no matter how big or small, helps us raise vital funds and awareness for the MPS Society while making this day as special as possible for Tillie Mae.

Thank you for standing with Team Tillie Mae. Together, you’ve helped turn a simple idea into something truly magical.

Let’s make these final few weeks count and give Tillie Mae the celebration she so richly deserves. 💜

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23/05/2026

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12/05/2026

Feeling grateful this International Nurses Day for this incredible team, who are there for us anytime, any day, anywhere. From checking in on us to helping with the little and big things, they’ve taken so much pressure off our family. It’s a club we never wanted to be part of, but we finally feel heard, supported, and truly cared for by a team who know Tillie best.

Here’s to all the incredible nurses that have been part of Tillie’s journey, Hannah, Dee, Georgina, Fiona,Maggie,Gemma,Amy, Megan Mathilda, Kirsty and so many more that have listened and supported us and got behind our girl when needed. Thank you to each and everyone of you 💖

Oh how this girl does it again 💖 first full week back to school! Ok only a few hours per day but still a FULL week !!! F...
01/05/2026

Oh how this girl does it again 💖 first full week back to school! Ok only a few hours per day but still a FULL week !!!

Finishing the week off with the biggest smiles when I asked her if she loved being back to school 🥰

Come on my girl let’s put the last awful 6 months behind us and start living again.

💖

Andddddddd we’re home. Not quite worked out what has caused all these complications. Tillie Mae has had 4 different typ...
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 💪🏼💙

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Great Ormond Street
London
WC1N 3JH

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