Jacks Journey

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

18/06/2026

I think Jack is going through a sleep regression as he’s partied all night for the last three nights!

They say it’s when their brain is learning a new skill.

I think he’s cracked it, today he has learned to spin 🤣🤣😍😍😍

One year of the ketogenic diet. And what a difference it has made.Yes, Jack still has several seizures daily, however hi...
13/06/2026

One year of the ketogenic diet. And what a difference it has made.

Yes, Jack still has several seizures daily, however his epilepsy is very severe so we never expect him to be seizure free.

Before Keto he was being blue lighted into hospital every week, and we had the air ambulance out three times in the space of two months. At one point Jack had to be intubated in intensive care.

We had to have some very difficult conversations, that no parent ever should have, and we feared we were going to lose our beautiful boy.

Thanks to Keto we have only had two emergency admissions in the last 11 months, and one planned admission for his G Tube Surgery.

I am so grateful that we were given this option and we’ve been supported the whole way through by our amazing Keto dietitian, we are so proud of our beautiful happy little boy and hope that he continues to thrive in his own unique way 💙

12/06/2026

Should be fast asleep but no, he’s laughing at absolutely nothing 🤣🤣

Jack is our only child who isn’t in a sleep routine at his age, due to all the meds he’s on they can make him very drowsy so he sleeps a lot in the day, and then becomes wildly hyper as they start wearing off just before his bedtime dose.

Doesn’t matter though, we soak up every single moment like this where Jack shows us just how much of a cheeky, funny boy he is!

03/06/2026

Click the link to watch the full video.

Here I talk about the volunteer support that my family gets from the wonderful Karen at Tŷ Hafan Children's Hospice

So many people have the same perception of Ty Hafan - that it’s a place where children go to pass away.

While this is correct - there is much more to it.

It’s a safe space.

It’s a massive world of support.

Respite breaks
Sibling events
Counselling for parents and siblings
Parties
Events for mums and dads
A support worker on hand when it gets tough
Access to palliative care doctors and nurses

And so much more.

Our wonderful volunteer Karen has been coming into our home and helping out in so many ways - helping to re arrange my kitchen cupboards, folding the washing, putting up with my epic meltdowns and giving Jack some cuddles, stories and massages while I have a cuppa in peace.

She is incredible.

Please - if you have even a couple of hours to spare each week it would be so valuable to a family going through crisis - please consider contacting Ty Hafan to see what difference you could make as a volunteer!

Yesterday we said goodbye to the NG tube and hello to a new Mickey button! This will make feeding and administering meds...
02/06/2026

Yesterday we said goodbye to the NG tube and hello to a new Mickey button!

This will make feeding and administering meds so much easier, as well as less tube pulling and replacing (although I’m sure he will try!)

Handing our precious baby over to a team of surgeons was so hard! But they were incredible with Jack and after one night in hospital he’s been discharged home.

I just love seeing all of his perfect little face 😍😍😍

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. 💙

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.

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St Athan
Barry

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