Freddie’s Journey

11/03/2026

Freddie’s first night in a big boy bed!!!

He’s been in a junior sized profiling bed since his cot, but he’s getting soooo tall that we had to make arrangements for a full sized bed. Today they delivered his full sized profiling bed, and he just looks lost in it, bless him. Hopefully now though, he can get a good nights sleep without kicking his medical equipment at the bottom of his bed. Lol! 😂

05/03/2026

So it’s no secret that the start of this year has been horrid. Three hospital admissions…constant battles with Fred’s health…it’s been awful. Andrew and I have been through the wringer since new year. So when Rainbows hospice called on Friday and asked if Fred would like to come in this week, we were very quick to say “yes please”. He’s still not great. Needing a lot of oxygen. We got a phone call from the nurses last night because they were concerned and Andrew had to drive out to check on him. 🤦‍♀️

Today we went down and spent some time with him and he seems a lot happier today. So we took the opportunity to get him in the pool. Loved it. In the pool is the only opportunity I get to give him proper cuddles.

The concern now is that the series of chest infections has damaged his lungs more permanently, as he’s needing so much more oxygen so we’ve contacted his doctors to do some investigating. We always knew that this would happen eventually, so it’s just getting a plan in place to manage it. Fingers crossed that his health takes an upward turn soon.

28/02/2026

You know your child has a rare condition when doctors ask YOU what it is…today is rare disease day. Freddie’s main condition is polymicrogyria (PMG) which is in itself a rare condition. In layman’s terms, it means his brain didn’t open up properly while in the womb. His PMG is globalised, meaning 95% of his brain is affected. Alongside his PMG he has calcification (bits of bone) through the front of his brain, and two parts of his brain are completely missing. When speaking with a genetics doctor after Fred’s birth, he only knew of one other child to have all three neurological issues, 15 years ago in America. That makes Freddie ultra rare.

It’s important to raise awareness of these conditions so that hopefully more research can be done. Every time a doctor says they’ve never heard of the condition, we explain it to them in the hope they’ll go away and learn.

21/02/2026

This half term officially sucks!!! Got discharged Tuesday….back in A&E on Friday! 🤦‍♀️🤦‍♀️🤦‍♀️

14/02/2026

Here again….😭😭😭

If you were to ask me how we are right now, we’d probably say the uniform answer of… “we’re okay.”

Honest answer though is that we’re exhausted…fed up…tired of our boy being constantly let down…tired of fighting battle after battle…tired of our girls constantly missing out on half term fun because of Fred’s health…tired of constantly having to explain our choices and decisions as his parents…just tired.

2026 so far….not great.

I know that this is just a bad period, and it will get easier. But right now…everything feels bleak. 🤦‍♀️😭

02/02/2026

When you receive this from the care agency to say thank you for being so understanding.

I’ve had a really emotionally draining weekend where I doubted everything about my ability to be Fred’s mum. I’ve felt let down and betrayed as well as other stuff going on plus today being quite heart wrenching anniversary. This has come at a time I really needed it. I love nothing more than fresh flowers in my home, so thank you!

19/01/2026

Is there anyone local to us who’d like to take on a new challenge? Freddie’s care agency are looking to find someone to come and support Freddie at home. All training will be given by the company and you will never feel unsupported. The company have nurses and senior staff on call 24/7 & we will never leave you alone with him until you’re 100% comfortable. It would include every other weekend and some nights so flexibility is important. It’s a great opportunity for anyone looking to try something new or existing carers looking to change companies. I’ve linked the ad below.

G&P Healthcare Ltd

18/01/2026

Just taking a moment to appreciate my eldest baby! I don’t she’s aware of just how incredible she is. Unfortunately due to our circumstances she often has to entertain herself. But she never complains or resents. She may not be aware, but she is a young carer. Siblings of complex children often get overlooked, but I’m not overlooking her. I never miss just how amazing she is. I’m so proud of her! ###

16/01/2026

So after nearly three weeks of Groundhog Day, Freddie went back to school today. My clever little man managed a whole day with no drama!!! ✊🏻✊🏻✊🏻 It’s been a horrendous start to the year, but after a day of normality, it feels like we’re finally getting our s**t together. So after a successful day of school, we’re gonna have a quiet weekend, (let’s not run before we can walk) and rest him up before attempting a ‘normal’ week. 🤞🏻🤞🏻🤞🏻

13/01/2026

Look who made it home last night!! We got the band back together!!!

06/01/2026

Having a mentally drained day today. I was hoping that Freddie would be discharged today but it feels like he’s taken two steps backwards. I’ve come home feeling pretty sorry for myself and aching everywhere from a week of hospital chairs. Just want him home now.

Unfortunately this feeling is part of parenting a medically complex child. I’m sure after a good nights sleep I’ll be feeling more positive. 🤞🏻🤞🏻🤞🏻

03/01/2026

So I came off social media earlier this week as I needed some time to give my head a wobble. I always struggle over the Christmas/New Year period as the whole season looks and feels different for us. We can’t make plans like other families as Fred gets so overwhelmed and it’s also likely that this will happen. Yep! He’s back on the ward!!

If you had asked me Tuesday, I’d have said that he’s as healthy as an ox and we’d managed our first Christmas and New Year without a hospital admission. Then the early hours of Wednesday (New Year’s Eve), he suddenly went downhill and by lunchtime he was in A&E with a chest infection.

Gutted!

Not just gutted! I’m angry! I’m angry that we’re here again! I’m angry that there’s nobody to direct my anger at! I’m angry that my boy goes through so much and it’s just not fair!

Needless to say that I’ve now given my head a wobble and I’m feeling much stronger.

Andrew posted a few days ago that one of his New Year’s resolutions is to tell people to f**k off more. Sounds like he’s trying to be funny doesn’t it?! He was being deadly serious! 2025 was a hideous year! Not because of Freddie. Freddie was an absolute legend…probably healthier and stronger than he’s ever been. It’s everything around him that’s been a nightmare. He has been let down time and time again and quite frankly we’re sick of it. So we’re not gonna idly sit back and watch people we know spewing anti-disability and anti welfare bulls**t on social media…that’s how you’ll find yourself blocked. We’re not gonna accept half baked promises anymore from people in power, or people in offices who just see Freddie as a name on a list or an NHS number.

This little boy is the kindest, bravest, most loving soul you’ll ever meet. He deserves the world and so much more.

He may non-verbal but he has a voice. Andrew and I are his voice, and we plan to scream and shout until he gets what is needed. If that means more people get told to f**k off then so be it!! He’s my sunshine and he deserves everything in the world.

Happy new year everyone and get ready to hear me roar! 🦁