https://www.facebook.com/702368846564437/

Princess Tillie Mae fighting Sanfilippo Syndrome

Home
United Kingdom
London
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

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 💪🏼💙

14/01/2026

Almost 3 months in hospital with just a few odd days home on hospital leave.

It’s been once again a very challenging week.

Tillies MRI scan was clear.

She is still very uncomfortable and visibly in pain. She had her gastrostomy changed over to a button to then change it back again to a tube because she become even more agitated and it was clear she was very uncomfortable. This change back to the tube did help a little.

She is still unable to pass urine. Tomorrow Tillie will have her fourth general anaesthetic in 11 weeks in the hope to work out why she is in urine retention and to address a few things that have been picked up on a CT scan yesterday.

If I’m honest I’ve struggled. I’m feeling very broken with the ups and down and hospital life. It’s not been easy on any of us. Some moments have felt unbearable, and I won’t pretend I’m being strong all the time it’s too difficult to keep up. This has been hard in ways words can’t quite describe. Tillie has had complication after complication. She is not the happy girl she was before all this. She’s in constantly in pain and discomfort it’s hard to watch.

I look at her. She is still here. She is still our beautiful girl, we still have that connection, she’s telling me there’s something wrong with those eyes and yet as her mum I still can’t fix it for her but I will do my best to get answers.I have been begging Drs to help her. Some teams here have been truly amazing and supportive whilst we have been really let down by one specialist. (That part is for another day). I am her voice and I will speak up for her. We have had some awful times over the years but these last few months have been truly heartbreaking. On top of all this the systems that are meant to help and support at times like this are broken and transitioning to adult care is a scary place to be. For years we were told she must go to Great Ormond Street as her condition is complex yet with turning 18 things are becoming increasingly more challenging and lots of red tape.

Tomorrow is a new day and we pray we get the answers we need to start planning that discharge we have all been longing for 💙

10/01/2026

💔

07/01/2026

I just want to be a mum, not a nurse 💔

This is the reality for so many families.

Newborn screening should be available for all conditions. A simple heel prick can lead to early diagnosis, better outcomes, and long-term cost savings for the NHS where treatments are available. So much goes into gene therapy we need to used these treatments , but how can we when we don’t have newborn screening.

This Morning MPS Society UK, here for those with rare diseases

02/01/2026

Happy New Year !

We have had pockets of some kind of normality over the Christmas period but unfortunately we are back in Great Ormond Street after spending 4 days back in our local hospital.

Tillie Mae continues to struggle with pain, discomfort and now she is unable to pass urine without a catheter.

Tillie is nil by mouth at the moment as the plan is to do a MRI scan under General anaesthetic ( Tillie couldn’t lay still to have this done awake). She continues to be a challenge to the teams here. Our hope is that the MRI will identify what the cause is so that we can sort her discomfort out and get home soon.

It’s not quite been the best start to our new year 💙

24/12/2025

Merry Christmas from our house to yours 🎄♥️

We visited the GOSH chapel before Tillie Mae was discharged yesterday after another few days back in hospital after our weekend home leave.

Never have we prayed so hard in this place. We are the lucky ones we are the family that got to go home with our child. We will be forever grateful to some incredible staff at GOSH, Phil in icu, staff nurse Gemma, Prof , Asma, Alex, Phoebe and all the nurses and students that looked after us all. It wasn’t always straight forward or easy but working together we got there.

No Christmas traditions for us this year as it feels so different and I’m not quite sure what world wind we have just been in but we are going to take this time to appreciate the important things in life. Family time and just being present with each other.

Merry Christmas all 🎄

20/12/2025

Feeling so very grateful, we’ve made it home for weekend leave. We are back to GOSH Monday to be reviewed with the hope to be fully discharged. Tillies wound needs to be healed , her bloods need to be good and cultures need to be clear then we will be discharged to the community teams. Almost 8 weeks in hospital and what a ride it’s been. At times I really didn’t think we would get home with Tillie Mae, a dark place we’ve never been before. It’s been heartbreaking to see what she has had to endure but she has showed remarkable strength and courage through this all. We will adapt as life seems a little different to us right now so much has changed, Tillie will guide us and show us yet again, we will continue to help build her strength and do our everything to give her the best we can . Thank you all for loving our girl. 🩷

15/12/2025

Tillie’s 18th birthday celebrations were not quite how we had imagined. We tried our very best to make it as special as we could. The lovely Singing Hands came and did a beautiful music session with Tills 🩷

Amazing friends and family came and spent the day with us to help make it a special one 🩷

The doctors and nurses also sang Happy Birthday and had cake with us 🩷

We were hoping we would be able to do a happy update on Tillie’s page once we were home, however we are still here. There’s been good days and bad days. We have had some really scary times, and we have never seen Tillie so poorly. We are now hoping things are improving.

We still have a way to go. Tillie is still spiking temperatures and is on two lots of antibiotics to cover all bases, as we do not yet know why this is happening. She has a new gastrostomy tube and the wound is looking so much better. She is managing small amounts of food and remains on TPN to keep her nutrition up. Today she has eaten a fair amount of food orally 💪🏼

We still have a long road ahead to build her strength back up.

We would love to say we will be home for Christmas, however after the last few weeks, we are taking it one day at a time. If we don’t get home, we may be able to get home leave. Right now, we are just grateful for every step towards getting Tillie Mae better.

This has truly been such a difficult time. Whilst Tillie has been fighting her own health battles, we have also lost two incredible children we have been on this journey with — beautiful Ella and our dearest Caleb. We know this journey is hard, but this news truly broke us 💔 the courage these 2 families have shown has been totally admirable.

To all of our amazing friends, Tillie’s carers, our families and work colleagues — thank you for your support in what’s been a challenging time we are grateful for your kindness, understanding and help when needed 💙

Now let’s hope our next update will be from the comfort of our home.

Ps thank you Disney for the lovely visit today 🩷

08/12/2025

18 my girl 🩷 18 years loving you and I’ve been given the privilege to be your mum. Not where we wanted to be but sooooo grateful to celebrate this milestone. Keep being you my brave girl 🎂18🩷🩷🩷🩷🩷🩷🩷🩷🩷

03/12/2025

💙💙Olly Murs
Thank you ☺️

25/11/2025

Thank you for all you messages of support yesterday.

Today’s MDT meeting went well, the teams agreed things could be and should be done better.

Tillies metabolic team took lead and they had a very open and honest conversation with us. We went into the meeting not knowing how it was going to go. We just knew we needed to work together to get the best out come for our girl.

Whilst they said Tillie is still very poorly we are not having conversations about end of life or us not bring her home. They are confident this will take time and we must go slow but we will get her home and well. We will now have weekly meeting with all professional involved in Tillies care.

They believed this would be a straightforward procedure and did not expect Tillie to go through so many complications.

Already Tillie is looking much more comfortable and brighter today.

It was agreed to stop all feeds via the NJ as it’s clear Tillie has allergies and doesn’t tolerate feeds via her NJ, they have now removed the tube, started her back on PN . She will now stay on PN to build her strength up to help her heal as she has lost a lot of weight. Once the wound heals we will then start a plan to get her feeding orally.
All this will be small steps in the hope to not cause any further complications or discomfort for Tillie.

Sadly this all means we will not be going home for a while and Tillie will be here for her birthday, this was upsetting to hear but our priority is to get our girl home well.

We are now under the palliative care team but again they reassured us that they are here to support us and work with all the teams caring for Tillie. They will also support with pain management.

Once again thank you for your support and messages.

For now we will be taking a social media break to fully focus on Tillie Mae’s recovery and we will be back once we are home and well 💙💙

24/11/2025

Going into week 5, things are getting worse not better ,no improvements other than infection markers down. Friday we thought we were winning and things were starting to improve.

Friday night Tillie had an episode of head drop possible seizure but came out of it very quickly could have also been a blood pressure drop. Early hours Saturday Tillie developed diarrhoea which is still on going. Feeds were stopped Saturday and fluids started, Tillie then became very flat and swollen. She is now starting back on TPN - nutrition via her PICC -Line.

An emergency MDT meeting is being held tomorrow with the palliative care team, metabolic, Gastro and Snaps team.

We should be seeing improvements by now but unfortunately Tillies condition is continuing to deteriorate. We are pushing for a better plan and want to see improvements not decline.

It’s hard to believe Tills was enjoying life, walking and eating well before all this, MPS is brutal butttttt we have worked to hard to get this far we will NOT let this beat our girl ! 💙

Address

Great Ormond Street
London
WC1N 3JH

Website

facebook.com

Alerts

Be the first to know and let us send you an email when Princess Tillie Mae fighting Sanfilippo Syndrome posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Featured

Help Mind Body

Want your practice to be the top-listed Clinic in London?