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CHALLENGE 11🍺💜

“I bet you can’t walk to the pub with 70kg on your back and down a pint of Guinness.”

FINALLY. A challenge I’ve spent years preparing for. 😂

Massive thanks to Jamie from @barrel_and_bean_dromore for getting involved!

Also a huge thank you to Dromore as a whole. The support the town has shown the last week or two whilst I’m out with the tyre has been amazing. I even got my first cash donation today!

As ridiculous as these challenges are, there’s a serious reason behind every single one, getting more eyes on Tate and his fight against Sanfilippo Syndrome.

Who’s setting challenge 12?👀

💜 WeightForTate.com by @savingtate1

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2 days ago

Some days I feel like I can take on the world. Other days I’m scared shitless and just trying to get through the day.

Watching my little man running around, loving life, while grieving the future I pictured for him is something I’ll never get my head around. He’s right here, and I already miss things I haven’t lost yet.

I’m grateful for today, terrified of tomorrow, and doing everything I can to give him more of both. 💜 #savingtate #sanfilippo #childhooddementia #SEN #fyp by @savingtate1

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3 days ago

“Zero activity.” Those two words have been stuck in my head for days.

When Tate was diagnosed, I didn’t read every word of every letter. I was trying to process the diagnosis itself. But recently, while filling out paperwork, I read it again. Tate has zero activity in the enzyme affected by his Sanfilippo.

His metabolic team have explained that some children have a partially working enzyme, which can mean they regress more slowly. I’d been holding onto hope that Tate had some working activity, that I might have a little more time. Reading that letter has made everything feel even more frightening.

He turns six in several weeks, and I’m petrified of what the next year could bring without treatment. I’m scared that by next November he could need tube feeding and that his mobility could have significantly declined, or be gone. I don’t know, and that’s the terrifying part.

I feel like I have months, not years, to raise this money before the physical regression takes more from him. The thought of not seeing his tenth birthday is really, really scaring me.

I’m not ready to accept a life without treatment. I’m not ready to watch my son lose his abilities in front of my eyes.

I need everyone’s help. People with big platforms, people who can make a significant donation, anyone who has lost someone to dementia and understands how cruel it is. Please help me reach the people who could change Tate’s future.

I need a miracle, and I can’t make it happen on my own. The fundraising link is below. Every donation and every share could help get my little man closer to treatment. 💜 https://www.justgiving.com/campaign/savingtatefightagainstchildhooddementia #savingtate #sanfilippo #terminal #childhooddementia #fyp by @savingtate1

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3 days ago

Well, that didn’t take long to contradict yesterday’s video. 😂

My wife told me not to. ChatGPT told me not to. My mum and dad will probably tell me off.

But after a mentally tough few days, I needed this.

70KG ON MY BACK. 5KM COMPLETED. 💜

116 minutes under the weight which included a couple of stops and also the time spent having to go back and get my phone after doing the gimpy videos of walking past it 😂

Legs feeling it on the hills, traps absolutely destroyed, but breathing was fine and the back held up.

Was it sensible? Probably not. Am I relieved? Absolutely.

An important milestone ticked off two days ahead of schedule. Still a hell of a long way to go, but tonight meant more to me than just 5km.

I’ll stop being a drama queen now!

14th November will be here before we know it!

WeightForTate.com by @savingtate1

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3 days ago

So grateful to Michael from Sanfilippo Project for reaching out and wanting to help get Tate’s name and story seen over in the US 💜

The interview will be online at some point next week, and I’m forever grateful for the chance to reach more people.

There really is strength in numbers. The more people who know about my little man, the more people who might share his story or donate towards the treatment I’m fighting to get him.

Every share could reach someone who can help me save Tate. I can’t do this on my own, and every person getting behind him means so much 💜 #savingtate #sanfilippoproject #awareness #childhooddementia #fyp by @savingtate1

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4 days ago

Tate has never really taken notice of Oscar and just treated him like a piece of the furniture. But Oscar is so good with him and allows Tate to get away with all sorts 🤣 when Tate falls asleep, Oscar will go and lay right near him for a cwtch. It’s so frickin cute. It’s like he knows Tate is extra special 😋💜 #savingtate #sanfilippo #SEN #autism #fyp by @savingtate1

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4 days ago

I’m not usually one to feel sorry for myself, but the last few days have been tough mentally.

I hurt my back on Sunday and haven’t trained since. With just over 5 weeks to go and an important milestone looming, I’d be lying if I said I wasn’t worried.

The clock is ticking, and sitting around doing nothing is driving me mad.

But the challenge is still the challenge. I’m just going to try and be sensible for a week and then we get back to work!

WeightForTate.com by @savingtate1

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5 days ago

Anyone else’s kid totally obsessed with a toy that screws with your brain?! 🤣 #savingtate #SEN #overstimulated #sensory #fyp by @savingtate1

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6 days ago

We were proud to help put together Kicking It 4 Tate, raising money and awareness for @savingtate1 and his fight against Sanfilippo Syndrome Type A. 💜

While we were there, we caught up with some of the players and asked why they wanted to get involved.

From footballers and rugby players to influencers and creators, everyone had their own reason, but the message was the same: we’re all here for Tate. by @savingtate1

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6 days ago

When your non verbal spicy kiddo HATES a haircut. I am not a hairdresser so yes. All over same length 🫠 but it does grow back a little in a couple of weeks and look alot better 🤣 if anyone has any better ideas, lemme know 🤣 #savingtate #sanfilippo #autism #SEN #fyp by @savingtate1

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6 days ago

In layman’s terms, what Tate has and what it’ll do to him without treatment 🥲 #savingtate #sanfilippo #childhooddementia #nonverbal #fyp by @savingtate1

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7 days ago

Dementia isn’t just something adults get. Sadly, children get it too. My son Tate has Sanfilippo syndrome type A, a terminal condition that causes childhood dementia.

Without treatment, life expectancy is around 10 to 15 years, and some children don’t even reach their 10th birthday. Tate turns 6 next month. The thought that he could already have lived more than half his life absolutely terrifies me.

There is treatment in the USA, but the price is around £2.95 million. It’s an enormous amount, and I can’t raise it on my own. But I’m not ready to accept a future without my little man when there is treatment to fight for.

I don’t know what the next year will bring. Will he still be able to walk? Will he still be able to eat? Sanfilippo takes away children’s abilities, and the uncertainty of when that will happen is one of the scariest parts.

Over £160,000 has been raised already, thanks to everyone supporting Tate. Every donation, every share and every person who helps spread his story gets me closer to that huge target.

Time isn’t on our side, guys. I’m absolutely petrified, and I need your help. Please have a look at the information in the bio to see how you can support him. 💜

I just need to save my little man 😭 #savingtate #sanfilippo #terminal #childhooddementia #fyp by @savingtate1

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8 days ago