Freddie’s Journey

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All ready for my birthday boy tomorrow!!! Freddie doesn’t cope well with birthdays like most children. He gets massively...
15/08/2026

All ready for my birthday boy tomorrow!!! Freddie doesn’t cope well with birthdays like most children. He gets massively overwhelmed & stressed by it all. So this year we’ve gone for a slightly different approach. Instead of loads of gifts that he can’t play with, stresses him out, and his sisters will probably claim eventually, we’ve decided to limit his gifts and take him out for the day instead. So tomorrow, we’re off to the space centre. We were torn between animals (Bluebells farm), the space centre and a train ride (Ecclesbourne Valley Railway). All three things, Fred would love. However the space centre has proper changing facilities for him so that swung it. So here’s hoping my special boy has the best day tomorrow!!!

Freddie’s not impressed by his sisters plan to do some painting….😂😂😂😂
10/08/2026

Freddie’s not impressed by his sisters plan to do some painting….😂😂😂😂

Freddie went out for a walk today with his carers. He loved seeing the horses and enjoying the roundabout.
05/08/2026

Freddie went out for a walk today with his carers. He loved seeing the horses and enjoying the roundabout.

We requested Fred’s standing frame to be brought home for the summer, so today he had a little playtime while standing u...
01/08/2026

We requested Fred’s standing frame to be brought home for the summer, so today he had a little playtime while standing up. He even helped Lizzie and I to bake a cake. 🎂 He’s a very tall boy now!! lol! 😂

This is just a glimpse of my day. Just had to do an emergency drive to Fred’s school on an inset day. Fred’s standing eq...
23/07/2026

This is just a glimpse of my day. Just had to do an emergency drive to Fred’s school on an inset day. Fred’s standing equipment got transferred home for the summer…without the charger! 🤦‍♀️🤦‍♀️ I do feel like I spend my life putting out fires…this was a relatively minor one. I can’t even be bothered to be annoyed as stuff like this happens so often. 🤦‍♀️🤦‍♀️😂😂😂

Andrew and I were having a sort out in our bedroom and we found ‘home teddy’! I feel proper emotional finding him. He wa...
22/07/2026

Andrew and I were having a sort out in our bedroom and we found ‘home teddy’! I feel proper emotional finding him. He was bought for Freddie by his Nanny Elaine when he was tiny. He was dubbed by his nanny as ‘home teddy’ to look after Freddie until he came home. It was Fred’s constant companion in hospital when he was small, all the way through Covid, countless hospital admissions and intensive care stays. Finding home teddy brought me straight back to those few years where everything was in the air and we didn’t know what the hell was going on. Although I feel emotional finding him, I was thrilled to find him as he’s a reminder of how far Fred has come and how strong and remarkable my little dude is. It’s also a lovely reminder of just how loved he was by his nanny.

Well that’s year 2 done at school!!! ✅ Freddie has coped so much better this year at school. I think it’s helped that we...
21/07/2026

Well that’s year 2 done at school!!! ✅ Freddie has coped so much better this year at school. I think it’s helped that we’ve started allowing him a rest day every Wednesday (with the approval of school and his doctors). He’s having much less sickness, and his overall attendance has improved. We’ve also noticed that he’s more with it over the weekend as he’s not so exhausted. Just one more kiddo to break up on Thursday and then we’re into our six week break from school runs.

Well done Freddie on a fab year at school!!!! 💪

So Freddie had a check up on his VNS device today at QMC. (For those that don’t know, a VNS is a device in his chest tha...
07/07/2026

So Freddie had a check up on his VNS device today at QMC. (For those that don’t know, a VNS is a device in his chest that helps control his seizures for people with drug resistant epilepsy.) We weren’t pushed for time today, so I decided to take him on the tram. He loves the tram and it takes away the stress of trying to park at the hospital.

Really positive appointment today. She downloaded the data from his device as it records all seizure activity. She said she’s never seen such good data on one of these devices. His seizures are so well managed right now that the device isn’t working that hard. We’re absolutely gobsmacked.

To put in perspective, we’ve always been told that his epilepsy would be what takes him from us and his life would be short. Three years ago, he was seizing round the clock and was put into end of life care. We were even given a Disney ‘Make a Wish’, as we were expecting a really bad outcome. This device has not only pulled our incredible boy out of end of life status, but he’s stronger than ever. We’re now having discussions about what to expect in adolescence, which is a conversation we never thought we’d have.

My incredible, wonderful boy! I’m so proud of him and how far he’s come.

At times like this, I ask you all to think of Freddie and people like him. It’s an incredibly traumatic week for them. I...
24/06/2026

At times like this, I ask you all to think of Freddie and people like him. It’s an incredibly traumatic week for them. It’s a time of year dreaded by many like Freddie.

Think of your local gingers! 😂

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