Cody’s Fight for Time

07/10/2026

https://www.itv.com/watch/news/for-once-we-have-hope-mothers-plea-for-medical-treatment-not-yet-approved-in-uk/83h27f8

Watch the latest from ITV News - The use of gene therapy has been approved in the US for patients like Cody who have Sanfilippo Syndrome, but it has not yet been allowed for use in the UK.

27/09/2026

💜 PUB QUIZ NIGHT FOR CODY! 💜 💜

Get your thinking caps on because we’re having a BIG PUB QUIZ NIGHT to raise more money for Cody’s fight for time! 🥹💜

📅 Saturday 28th November
⏰ 7:30pm
📍 The Potters Wheel Pub
🎟️ £5 per person

Grab your mates, family, work colleagues or whoever you fancy dragging along! 😂

👥 Teams of 4+ are preferred, but don’t worry if you don’t have a full team — you can still come along and we’ll sort you out!

And it’s not just a quiz… 👀

🎟️ RAFFLE
🎯 OTHER GAMES & CHALLENGES
🏆 PRIZES
🍻 DRINKS
😂 A LOT OF QUESTIONABLE ANSWERS

All money raised will go towards Cody’s Fight for Time and helping us continue fighting to get Cody the treatment and support he needs. 💜

We’d absolutely LOVE to see loads of you there and have a proper fun night while raising money for our boy. 🥹

Tag your quiz team below and let us know who’s coming! 👇

💜 £5 gets you in — bring your brain, your mates and your competitive spirit! 💜

💜

27/09/2026

Georgia Nonas is in a desperate race to raise millions of pounds to secure treatment for her little boy

23/09/2026

Our Tatey Matey 💜
One of Cody’s Sanfilippo besties, make sure your all following their story along with ours 💜

In September last year five-year-old Tate Flaherty from Swansea was diagnosed with a rare, genetic and terminal condition often called childhood dementia.
The family have now had some really good news. Life changing therapy to stop his condition progressing has been approved in the US.
But it comes at a huge cost. The family have been told that in America a pharmaceutical company is set to charge £2.95 million per child to use the treatment. Families in the US will pay using health insurance, but for Tate’s mum Tammy McDaid it is a frightening amount of money to raise.
She said: “When I heard the treatment had been approved, I celebrated.
"It’s incredible news for children with Sanfilippo syndrome, and I hope one day parents in the UK will be told what can be done for their child, instead of being told to go home and love them while they can.
“But the next day, reality hit. I’m so happy for the children in America who will get access, but Tate doesn’t have years to wait for it here. I’m a solo mum, and I can’t just sit and watch my only child deteriorate when there’s now a treatment.
"We’ve raised over £140,000, which is incredible, but the amount we still need is frightening. I’ll keep pushing for Tate for as long as it takes.”

23/09/2026

Another one of our Sanfilippo besties! Sharing our friends today! Very proud of them all 💜💜
Give our Koley a follow 💜

23/09/2026

💜 WORLD CHILDHOOD DEMENTIA DAY 💜

Today is World Childhood Dementia Day.

When people hear the word dementia, they often think of old age. They don’t think of babies, toddlers or children. They don’t think of parents watching their child slowly lose skills they once had, or of families having to learn how to care for a child whose brain is being damaged by a devastating disease.

But childhood dementia is real. And this is our reality.

Our beautiful boy Cody is 8 years old and has Sanfilippo syndrome type A rare genetic condition that causes progressive brain damage and is often described as childhood dementia.

Cody is non-verbal. He has lost skills that he once had, and his world has become increasingly difficult to navigate. But he is still Cody. He still laughs, loves being outdoors, gets excited by lights and water, and brings so much love into our lives. 💜

For years, we were told there was no treatment that could stop this disease.

And then everything changed.

UX111, now called Fayuvi, has been approved in America for children with Sanfilippo syndrome type A. For the first time, families receiving this diagnosis can search for treatments and find something other than “there is nothing you can do.”

That is HUGE.

It doesn’t erase what Cody has already lost. It doesn’t tell us exactly what the future will look like for him. And we still have a huge journey ahead to try to get him access to this treatment.

But there is hope.

And hope is something families affected by childhood dementia deserve. 💜

Today, I want to remember every child living with childhood dementia, every child who has been lost, and every family fighting alongside them.

I want to thank the researchers, scientists, clinicians, charities, campaigners and every single family who has spent years raising awareness and refusing to accept that our children should simply be left without options.

Please take a moment today to learn about childhood dementia.

Because children shouldn’t have to be forgotten simply because dementia can happen in childhood.

For Cody. For every child. For more time. For the mammas who fight along side me Saving TateKole’s Fight💜💜💜

20/09/2026

If you’re new here, this is our beautiful boy, Cody. 💜

Cody is 8 years old and has Sanfilippo syndrome type A — a rare, progressive and life-limiting genetic condition.

Since our first introduction video, so much has changed. We’re now fundraising to get Cody to America to access the UX111 treatment, and we’re doing everything we possibly can to give him that chance.

Behind the diagnosis is just our funny, cheeky, loving little boy who deserves the opportunity to keep making memories, keep smiling and keep being Cody. 🥹💜

This journey is one we never imagined we’d be on, but we’re so incredibly grateful to every person who has supported us so far.

If you’re new here, welcome. Thank you for being part of Cody’s journey. Please follow, share and help us spread his story. Every single share really does make a difference. 💜

https://gofund.me/d666b37cb

20/09/2026

Huge shoutout to these 5 absolute legends! 💜
Today, 4 Paediatric Dietitians and a Specialist Paediatric Nurse from the RVI took on a massive 27-mile walk along the coastline to Bamburgh Castle to raise funds for my boy Cody.
Not only do they look after our kids every day at work, but they also go above and beyond in their own time like this. We are so grateful for their incredible support, energy, and dedication.
Thank you so much, ladies! You are amazing! 👏✨

20/09/2026

So many people have asked me how I’m feeling over the last few days, and honestly… I don’t really know how to put it into words.

My heart is so incredibly full, but at the same time, I feel completely up in the air.

The formally known UX111 has now been approved in America, and that is something I never thought I’d get to say. After years of Sanfilippo being a diagnosis where you could Google “treatments for Sanfilippo” and be met with there is nothing you can do to save your child, there is now a treatment that has actually been approved. That feels absolutely huge.

And I keep thinking about the parents who will receive this devastating diagnosis in the future and do that same Google search. Instead of being met with the hopelessness that we were, they might find something different.

They might find hope.

And honestly, that makes my heart burst. I hope this is the beginning of a future where no parent has to feel the complete helplessness that we felt when we were given our diagnosis. I hope one day Sanfilippo is a disease where families are given options, treatments and reasons to believe in a future.

But it is bittersweet.

Because right now, the treatment is only approved in America, and it is not something we can simply afford ourselves. So while I am genuinely overjoyed that this treatment exists and that other children may now have access to it, there is also a huge part of me screaming, “Please let this be possible for our child too.”

That is the part I’m struggling with today.

I feel hopeful. I feel scared. I feel grateful. I feel heartbroken. I feel excited. I feel completely overwhelmed by what this could mean.

And I don’t know what happens next.

But one thing I do know is that I will never give up.

We will keep fundraising. We will keep fighting. We will keep asking questions and looking for every possible route to give our child the best chance we can.

So if I seem a little lost or emotional at the moment, that’s why. This news has opened the door to hope, but we’re still standing on the other side of it, desperately trying to find a way through.

For now, I’m just trying to hold onto the most beautiful part of this news:

There is hope where there once was none.

And for every family who comes after us, I pray they never have to feel the hopelessness we felt. 💜