Jacks Journey

Jacks Journey Our Jack - born with a rare life limiting genetic disorder - https://gofund.me/5162cc4b

This handsome little pudding of ours doesn’t cope well in the heat. Over 100 seizures yesterday. We managed some time at...
25/05/2026

This handsome little pudding of ours doesn’t cope well in the heat.

Over 100 seizures yesterday.

We managed some time at our friends today (in the shade) but it’s catching up with him now and he’s had some awful spasms tonight. He’s still a happy bunny though.

He has also pulled his tube out four times today 🤦🏼‍♀️

We had planned a day in Legoland tomorrow but we’ve looked at the forecast and it’s going to be a scorcher - two hours in the car is going to be way too much for him so we sadly had to decide to cancel.

My heart broke a little as again I feel our other kids miss out. So I went on to order a BBQ, 12ft pool and some other bits for the garden, so on the days where Jack calls the shots I know the kids will have plenty to keep them entertained 💙

These last few weeks haven’t been great, but I feel like our little Jack is coming back to us today - he’s been smiling ...
10/05/2026

These last few weeks haven’t been great, but I feel like our little Jack is coming back to us today - he’s been smiling and laughing so much, even pulled his tube out 3 times in one hour, so he must be feeling better 🤣🤣💙💙 proud of my baby always xx

Extra meds today for little man. After coming home from hospital with a sickness bug he now has an ear infection. We’ve ...
09/05/2026

Extra meds today for little man.
After coming home from hospital with a sickness bug he now has an ear infection.
We’ve started antibiotics and are battling to keep his temperature down, but this morning he does seem a little bit more awake so fingers crossed we are going in the right direction 💙

If you see me with unbrushed hair, sick covered clothes, bags under the eyes, probably crying, just move along. It’s standard practise now 🤣

Just wanting to explain a little snippet of the fears we go through as parents of a complex needs child. When you’re tol...
06/05/2026

Just wanting to explain a little snippet of the fears we go through as parents of a complex needs child.

When you’re told they have a life limiting condition, and it could happen at any moment, the fear lives inside your head every single day.

Even on the more settled days, even on the days we celebrate a milestone.

Then there are the times when things go wrong.
And that’s when it completely consumes you.

Something as simple as a sickness bug last week for Eliana - our way of dealing with it was lots of cuddles, fluids and rest.

When it was Jacks turn it was a mad rush to the hospital.

Not keeping his meds and fluids down can be fatal for a child like Jack.

And we always wonder…

Is this it?

Is he going to come home again?

We are so thankful that he has been discharged and we are now back home, but the bag is already packed for next time. Myself and Nick now have to navigate four children, Nick’s job, caring for Jack and running the house while dealing with the trauma of the last few days.

I also wanted to thank everyone who has commented on my post, and reached out for support - we truly appreciate all of you and if I haven’t had chance to reply yet I will - I’m just getting my head around medication changes and a very agitated baby. We went for a little walk this morning as we’ve both been in tears, Jack had a great sleep and I feel a little calmer now. 💙

How quickly this boy can go from smiling and laughing to being rushed into hospital. Unfortunately Jack has picked up a ...
05/05/2026

How quickly this boy can go from smiling and laughing to being rushed into hospital.

Unfortunately Jack has picked up a sickness bug from his sister. His temperature spiked but he couldn’t keep meds down, or his feeds which are vital to keep his ketones in check to manage his seizures.

We spent last night in the hospital, he already seems to be improving slightly but we need him to keep his feeds down before they’ll let us come home, my poor little stinker 💙

Jacks new specialist bed arrived today. He looks so tiny in it 😍😍😍 This is a game changer for us. He’s forever hurting h...
28/04/2026

Jacks new specialist bed arrived today. He looks so tiny in it 😍😍😍

This is a game changer for us. He’s forever hurting himself on the cot bars and getting his limbs stuck.

We also now have him hooked up to his feed pump for six hours a day. As we’ve recently increased his feeds he’s being sick, so needs to be propped up while the pump is on. The bed is electric so we can now elevate him slightly to prevent choking.

And it’s a bonus for mummy because her back will be very thankful 🤣😍💙

16/04/2026

Not a pleasant video but I like to raise awareness as part of our journey with Jack.

Infantile Spasms - also know as West Syndrome.

A rare and serious form of epilepsy. Usually consists of head drops or a “jack-knife” movement, coming in clusters and lasting up to 45 minutes.

This is usually caused by a chaotic brain wave pattern as we have seen in Jack.

It’s normally treated aggressively with a high dose of steroids, which we did in January last year. Sadly Jack relapsed and recently the spasms have returned more often and more intense.

The risk with the condition is that it causes a regress in development, but the biggest one for us is that it can lead to worse seizures with a potential diagnosis of Lennox Gastaut syndrome.

Jack already has a serious form of drug resistant epilepsy. We are on four different medications plus the Keto diet.

We are slowly building up to a higher dose of his newest medication, so sadly we have to wait and see if this helps reduce the spasms. If not, the next course of action is another aggressive treatment called ACTH which involves daily injections, very close monitoring and having to be very careful as it compromises the immune system.

Our worst fears are there every day, behind my smile, sarcasm, inappropriate humour, I grieve for what his life could have looked like, and for our uncertain future. Despite all of this Jack continues to smile and laugh and throw an epic tantrum which makes mummy and daddy very proud 💙

03/04/2026

Today I took the kids to Smyths to spend some of their money they’ve had for Easter.

I was looking around and saw many things for Summer time - water and sand tables, ride on trikes, little slides, footballs, paddling pools etc..

It made me feel really sad for a moment. These are things that I should be buying for Jack to play with, I can’t buy him Easter eggs, he has SO many clothes and it’s very rare we find toys that are suitable for him.

He’s still been quite unstable since leaving the hospital so my emotions are all over the place which has probably made me feel worse.

But when I got home I felt like Jack knew, he rolled over and grabbed this little toy and was playing and chatting for a good two minutes.

It’s as if he said “mum look I can play with toys!”

It’s very rare that he is awake enough and interested enough - but it was such a beautiful moment, regardless of what he isn’t able to do, he certainly knows how to bring us the most joy and melt our hearts 💙

We’ve just added a Firefly Playpak to Jack’s world, and we’re so excited about what it can offer him.It supports his tru...
25/01/2026

We’ve just added a Firefly Playpak to Jack’s world, and we’re so excited about what it can offer him.

It supports his trunk and pelvis while still allowing him to move, twist and experiment, which is so important for building strength, balance and confidence. Most of all, it gives Jack the chance to play, explore and be comfortable on the floor in a way that meets him exactly where he is 💙

This feels like a big, happy step for Jack — more comfort, more freedom, and more chances to explore his body and the world around him.

23/01/2026

Proud of our Jack, he’s tolerating his standing frame SO much better, we used to have huge meltdowns (me included) but this morning he’s enjoyed it so much and has even been playing with some toys. Our little trouper 💙

No stopping the boy now, since he first rolled he hasn’t stopped, and now he’s pushing himself up, he’s very proud as yo...
18/01/2026

No stopping the boy now, since he first rolled he hasn’t stopped, and now he’s pushing himself up, he’s very proud as you can see 😍 well done our strong beautiful boy 💙

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