Freddie’s Journey

21/04/2026

It’s that time of year again!! The weather has warmed up and the bastard ants are trying to move in again!! So Freddie has temporarily moved onto the airbed in the lounge to keep him away from them, and baiting stations have been set up to kill the little buggers! Had to keep our boy safe! Every year this happens!

14/04/2026

So it’s been a while since I updated you all on Freddie. I’ve noticed I’m always quick to update when he’s poorly but slow when he’s doing well. 🤦‍♀️

He’s doing so well at the moment. In the last few days he’s managed without oxygen which is the first time this year! He’s generally been really good. Averaging one seizure a week, which is outstanding for Freddie. Charming everyone with his smiles!!!! He’s my happy little ray of sunshine!! ☀️

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!!!