Princess Tillie Mae fighting Sanfilippo Syndrome

08/10/2026

Life’s been feeling lighter in some ways recently, but heavy in others.
It’s almost a year since life went crazy and we had to use so much strength to get through some really bumpy times.
The massive positives dare I say are that we’ve managed to stay out of hospital, and Tillie Mae’s care has now fully transitioned over to adult services.

That was stressful!

After a few bumps along the way, we finally have a fantastic medical team. They really listen to us, trying to understand Tillies needs and, most importantly, seeing her rather than just her condition.
Tillie still has lots going on, but we’re managing things well with the support of her amazing school team, regular MDT meetings and our lovely Roald Dahl nurses (who are very much on speed dial 🙈).
Tillie Mae is back at school full time and, another little positive, her hair is finally growing back. 💖

We are still fighting for the equipment she needs at home. Another complaint letter went off today. She has also started back on CPAP to try to improve her sleep. Some nights are truly awful, imagine a new baby or even being 18 again and up parting all night with no sleep. Sleeps over rated right !!!

Then there’s the big news about the FDA approval of a new treatment for Sanfilippo in America.
A lot has happened over the last few months, and the news about the new treatment has really highlighted just how difficult things are for the older children and young adults living with Sanfilippo.
Even if the treatment were an option here in the uk for Tillie Mae, I’m not sure I would put her forward for it. Not because I don’t want more for her of course we do but because it has made me think about the bigger picture.
Life is already challenging when it comes to accessing services, care and support. And sometimes I find myself wondering, if we were to outlive Tillie, who would love her and care for her like we do?
Medicine is moving forward, which is incredible, but the care, services and support around these children and young adults don’t seem to be moving forward at the same pace. And sadly, they certainly aren’t consistent everywhere.

Next July will be a huge milestone for us as Tillie Mae will leave education, and then she will be discharged from our children’s hospice this December, we are being referred to the adult hospice. But the adult hospice can only offer very minimal support and a place for end-of-life care , if I’m honest, this is not somewhere we would currently consider for Tillie .

The plan when she leaves school is even more uncertain. My expectation is high and apart from one place I’ve fallen in love with I’ve not managed to find anywhere else that comes anywhere near, the problem now will be the long wait list then funding to access it.

It all feels unnerving.

So much change.

And somehow, reaching this point means so much to be grateful for but losing so many services and people we have spent years building relationships and trust with , the people who know Tillie Mae, know us and know our family is hard. The thought of them not being there to support us right to the end makes me incredibly sad.

If this last year has taught me anything, it is that transition is a scary place to be.

When you have a child with a life-limiting condition, you need those services and that support more than ever yet because Tillie has lived beyond the life expectancy we were once given, it feels like the safety net around her and around us is slowly disappearing.
Transitioning needs to get better.
I hope over time we can build new relationships, find new services and meet people who will get to know Tillie Mae and our family so that she can continues to have the quality of life she deserves and be surrounded by people who see her, listen to her, love her and fight for her. 💖

28/09/2026

Aww our Tills supporting her big cousin this weekend 🥰

💚💛 THANK YOU TO OUR SUPPORTERS! 🏉

A massive thank you to everyone who came along on Saturday to cheer on the boys. It was a tough game, but your support from the touchline meant so much.

Players, families, friends and supporters — you’re all part of the Hatfield rugby family, and we’re grateful to have you behind us. 👏

GREEN. GOLD. HQE. 💚💛

🤝 Thank you to our main sponsor, Circadian Global Forwarding Limited, and all our sponsors for their continued backing. Your support helps make it all possible.

🌐 circadianglobal-forwarding.com

20/09/2026

Fab day out with these lovely ladies 💖

17/09/2026

Hearing this news tonight has my head in a spin. This is BIG news in our Sanfilippo community. There has never been any form of treatment for Sanfilippo families- no parent should hear the words take your child home and enjoy the time you have with them !!

We NOW have a treatment. Gene therapy!!!!

Sadly this has come too late for our girl and the battle to get this treatment over here in the UK has only just started. Our kids don’t have time on their sides so I pray for all the newly diagnosed families this comes through real soon and NICE agree funding. 💙

The U.S. Food and Drug Administration today approved Fayuvi (rebisufligene etisparvovec-hopf), the first treatment for pediatric patients with mucopolysaccharidosis type IIIA (MPS IIIA), also known as Sanfilippo syndrome type A.

03/09/2026

And here we are… Tillie Mae’s final year at her amazing school. 💖

How have we possibly got here? It genuinely feels like we’ve blinked and suddenly we’re standing at the beginning of her final school year.
Looking back over the years, all the hurdles, the challenges, and the way we once imagined life would look compared to how it has actually unfolded… is difficult to put into words.

I feel incredibly grateful that we’ve made it this far, but the journey hasn’t always been easy. Anyone who has experienced SEN knows just how challenging life can be at times. As parents, all we ever want is for our children to be safe, cared for, understood and loved for exactly who they are and to be in a school that truly gets them.

Tillie Mae has been lucky enough to have some truly incredible people guiding her, supporting her and loving her throughout this journey. People who have seen her for who she is, believed in her and helped her become the amazing girl she is today. We will be forever grateful to every single one of them. ❤️

If I’m honest, I don’t think I ever allowed myself to think this far ahead. I never really let my mind go to the point where Tillie would actually be leaving school. Perhaps it was a road we never thought we’d go down.
But here we are… 🥹

And whilst I’m so incredibly proud of her, this next chapter feels scary too. There is so much unknown, and the lack of local services and opportunities for young adults with complex needs is something that weighs heavily on my mind. Something I will be sharing with you all as we navigate the very broken systems that are meant to be there to support families like ours. I welcome any help or advice from people that have knowledge and experience in transitioning as we look into what support and services are out there for Tillie.

So this year’s first-day-of-school photo feels very different. It feels like the beginning of the end of a chapter that has given us so much.

I don’t want to wish this year away. I want to soak it all in. Every smile, every achievement, every little moment, every familiar face and every memory that we will carry with us when it’s all over.

Let’s make this the most incredible final school year my girlie 💖

23/08/2026

✨ Disney Dream 2026 ✨

Holland ticked off the bucket list ✔️

Making more precious memories before we once again hit the ground running.
From the magic of Disney, we went straight to the UCLH for a CT scan… which then led to another allergic reaction and a blue-light ambulance to our local hospital.

Tillie Mae still has so much going on and is struggling with pain, and some days it feels like we’re constantly riding that rollercoaster of ups and downs.
I think we’re getting pretty good at holding on tight through the highs and the lows now.

When people ask, “How’s she doing?”… the honest answer is, I really couldn’t put it into words.

There’s so much that goes on behind the smiles and the photos. We’re just taking it one day, one appointment and one hurdle at a time.

For now, I’m incredibly grateful for all the amazing people in our life walking beside us making these memories and the moments of happiness we can hold onto. 💖

21/08/2026

Some incredible photos from The Carnival of Hope. Thank you Aruni Y Photography for capturing such a wonderful day 💖

20/08/2026

A huge THANK YOU from the bottom of our hearts!

The support we have received for Tillie Mae’s Carnival of Hope has been absolutely incredible🩷
Thank you to every single person who donated, supported, shared, helped behind the scenes, and most importantly, everyone who came along and made the day so special ✨

We are completely overwhelmed by everyone’s kindness and generosity. An incredible amount of money has been raised, and we are so grateful to be able to make such a difference for Tillie Mae.

A donation will be made to Ray of Sunshine and MPS Society — two incredible charities that have helped Tillie throughout these years. 💛

The rest of the money will be used to help equip Tillie Mae’s transition from child care to adult care, helping us give her the very best support for the future.

None of this would have been possible without every single one of you. Thank you for believing in Tillie, showing up for her, and making our Carnival of Hope such a special and unforgettable day!

Thank you will never be enough🩷

12/08/2026

Solar eclipse 12/08/26