Jacks Journey

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

After our last admission we were slowly getting back into the swing of things even though we hadn’t fully recovered.But ...
04/09/2026

After our last admission we were slowly getting back into the swing of things even though we hadn’t fully recovered.

But yesterday after waving our eldest off to high school, and the two younger ones back in primary I finally thought “yes, I can get the house organised and back into a proper routine to work on my mental health” as it’s been a really difficult summer holidays.

First plan was breakfast with the school mums - Jack thought “absolutely not.”

Prolonged seizures while we were out and I had to max out his rescue meds. He stopped briefly so I took him home, then he started again.

45 minutes of a prolonged seizure followed and we were taken in by ambulance.

He stabilised briefly but then it happened again.

More doctors and nurses started appearing, there was talk of more meds and “upstairs” was mentioned.

For those fortunate enough to not know what they mean by upstairs - it’s intensive care.

The thought of being back there frightened the life out of me, it brought back all the trauma which was especially hard as it’s almost 2 years to the day that he was there before.

Thankfully the incredible doctors managed to get a line into his foot and give him a loading dose of Keppra which worked.

Jack came back to baseline and spent all night singing on the ward - we have had zero sleep but I don’t care - he is finally stable so we are waiting to be reviewed by neurology and hopefully we can bring him back home.

He’s showing slight signs of a possible virus brewing - in a way I hope this is the trigger for what happened yesterday. He is completely maxed out on his regular meds so we don’t know what will happen if the seizures he had yesterday are a development of his condition, rather than being triggered by illness.

At the moment all we can do is wait and see 💙

I’m so grateful to all of Jacks chosen aunties for staying with us, helping to get ready for hospital, getting snacks, delivering goods to the hospital and helping with the other kids - I would have crumbled without your amazing support and we love you so much xx

Well… we’re home! ❤️After another week in hospital, our little man is finally back where he belongs — at home, surrounde...
22/08/2026

Well… we’re home! ❤️

After another week in hospital, our little man is finally back where he belongs — at home, surrounded by his favourite people, his toys and probably wondering why we keep making such a fuss over him. 😂

It’s been another rollercoaster with Jack. He’s had a rough week, including some new seizure types which, because apparently his existing collection wasn’t quite enough 🙄, have given us something else to keep an eye on. His team have confirmed they’re atonic seizures and, for now, the decision is to monitor rather than add more medication and risk making our cheeky boy overly sedated.

The biggest challenge this week has been getting his feeds back on track after all the vomiting and his little tummy deciding it wanted absolutely nothing to do with food. We’ve gone from tiny amounts and continuous feeds, very slowly increasing things, and I’m so bloody relieved to say that he’s now back on his full feeds and keeping them down! 🎉

He’s still a little unsettled and exhausted, and we’re expecting it to take a little while for him to properly get back to his usual cheeky self, but seeing him smiling, laughing and playing again makes everything feel so much lighter.

And because no hospital admission would be complete without a bit of drama, he also managed to projectile vomit over some lovely play therapists, have ketones that repeatedly decided to scare the life out of us, and generally remind everyone that Jack will always be Jack and he is absolutely not interested in making anything easy for us. 😂

But he’s home. ❤️

And honestly, we couldn’t have got through another week without the incredible support around us. To our family and friends who have looked after the other kids, brought food, cleaned, checked in, kept us company, entertained the children, listened to me panic and generally kept us going — thank you.

To the incredible nurses, doctors, dietitians, epilepsy team, play specialists and everyone else who has looked after our boy this week — thank you for looking after him and for putting up with his particular brand of chaos. 😂

And to everyone who has messaged, checked in, sent love, offered help — we see it, we appreciate it, and it means more than you probably realise. ❤️

Now we’re going to concentrate on getting our boy properly back to baseline, getting some sleep (please, Jack 🙏😂) and enjoying being together at home.

One week later, a million worries later, and we’re finally back where we want to be.

Home. ❤️

Not a great deal has changed since my last Jack update.We are now on day 12 of vomiting.He was admitted to hospital over...
08/08/2026

Not a great deal has changed since my last Jack update.

We are now on day 12 of vomiting.

He was admitted to hospital overnight and we got discharged Thursday.

We swapped his milk to Dioralyte which thankfully he can keep down, but obviously that’s not sustainable.

We tried a new lactose free keto milk - made no difference.

We have tried building his milk back up (mixing small amounts of milk with dioralyte) - he was tolerating these but as soon as the milk increases he’s sick again.

We now have anti sickness medication, which is working most of the time, but yesterday when we tried increasing the milk/dioralyte ratio he was sick again.

So back to stage 1 of the feed plan for 24 hours, added in an extra dose of anti sickness today, and tonight’s feed will be increased to see how he copes.

Once we have used up the anti sickness meds we will need to try building the feeds up again, but if he continues vomiting then he needs to be re admitted for further tests.

At the moment the only answer they can come up with is that the sickness bug he had at the same time as Eliana is taking a long time to resolve, although his bloods are completely normal.

There were a few other families in the hospital for the same thing, but it’s more worrying for Jack due to his complex needs.

He’s lost a kilo in weight.
We’ve dealt with low blood sugars.
High ketones.

We are completely drained.
And for an extra slap in the face I picked up something too so joined in with the sickness yesterday, meaning Nick took over the care of the kids and the house while I rested.

We’ve been lucky to have so many people around us to make sure our other kids have had some enjoyment through these summer holidays - you all know who you are and we cannot thank you enough.

Thankfully Jack is well in himself and quite happy in between these episodes - so fingers crossed we can actually venture out of the house tomorrow and do something normal!

Throughout our journey many people have asked us about Jack’s prognosis.We are always open and honest, but a common phra...
06/08/2026

Throughout our journey many people have asked us about Jack’s prognosis.

We are always open and honest, but a common phrase pops up from people which I want to talk about.

For context - Jacks condition is life limiting and he isn’t expected to survive through this childhood.

A few people have said:

“Just don’t think about it”

Now, pretend you were in a car.
A car that you cannot control, stop, or get out of.

You have to follow the road and keep going, you have zero choice.

Imagine that you know at some point that car will crash, and the impact will change your life in ways you can’t even comprehend.

You try not to think about it - like you said.

You may briefly find distractions.

Losing yourself in some calming music.
Enjoying the beautiful scenery.
Opening the window and letting the breeze rush over your face.

Then you remember.

You’re going to crash.

You look left - another car, hurtling towards you at speed.

Will this be it?

A tree is about to fall down in front of you.
A tyre pops.

Now imagine the other car, the tree and the tyre as a common cold, a sickness bug or a seizure.

You ask yourself, is this the moment it’s going to happen?

Then it doesn’t.

The other car swerves just in time.
You manage to pass the tree before its trunk snaps.
You manage to keep driving the car when the tyre pops.

But then…

There’s another car.
Another tree.
Another broken tyre.

The cycle repeats itself.
You wonder…
You think the worst every time you approach each obstacle…

Suddenly you realise that the calming music is still there, the scenery, the breeze.

You try to soak it in, but it’s brief..

You had to shut it out because you were fighting battles from all angles.

Knowing that one of them, at some point is going to win.

And there’s absolutely nothing you can do about it.

This is what we live every single day.
It’s cruel.
It’s exhausting.

But we keep fighting, we keep driving, for as long as we need to keep our babies safe.

Please consider your words when speaking to parents of terminally ill children, we know you are trying to help, but sometimes just listening is enough 💙

15/07/2026

I told Nick last night that I was scared that Jack had lost the ability to laugh.

He hasn’t done a proper giggle in weeks - I think a mix of the heat, seizures, rescue meds, agitation meds all had such an impact on him.

Well anyway, this happened tonight.

It COULD be that he’s slightly high from the rescue meds he had earlier.

But still, there’s our happy little chappie 💙😍

It can be exhausting explaining to multiple paramedics, doctors and nurses everything about Jack’s condition. Sometimes ...
14/07/2026

It can be exhausting explaining to multiple paramedics, doctors and nurses everything about Jack’s condition. Sometimes in the early hours of the morning, or when we are gathering everything up ready for the hospital.

The medics have to input all of his information onto a tablet and it takes forever spelling everything out and my head hurts from all the repetition.

I thought this was a great idea, I can hand it to them to copy the information while I can focus on Jack.

Monkey boy has upped his game today. Although he can have hundreds of seizures a day, generally they are a mix of focal ...
09/07/2026

Monkey boy has upped his game today.

Although he can have hundreds of seizures a day, generally they are a mix of focal seizures (eyes bouncing to one side, lip smacking) absences where he is staring and unresponsive, plus infantile spasms which are rhythmic head drops.

When Jack was nine weeks old he suffered a tonic clonic seizure where his whole body was jerking - these are the most dangerous type, he stopped breathing pretty much instantly and he was resuscitate twice, needing a ventilator to breathe for him.

We have been fortunate that medication was started immediately and we made it almost two years without a tonic clonic.

Until today.

We were at the school watching our Oscars leaving concert but Nick had to leave with Jack towards the end as he started seizing. It was a tonic clonic which was extremely frightening, but Nick handled it like a boss and managed to get him out of it with only one rescue medication so that I could be there for our eldest.

We are so relieved that our boy got through it, but it also terrifies us for his future, and wondering if this seizure type is now going to be a part of every day life.

Fingers crossed it’s down to the heat and things settle down - I won’t pretend we aren’t absolutely drained but we are so thankful he’s okay and chatting away 💙

It’s a busy but productive week (yes I’m aware it’s only Tuesday) 🤣. Jack will be starting a few hours a week in childca...
07/07/2026

It’s a busy but productive week (yes I’m aware it’s only Tuesday) 🤣.

Jack will be starting a few hours a week in childcare from September - he has been funded a 1:1 who has lots of experience and will be fully trained in dealing with Jack and his condition.

The nursery very kindly offered for us to attend with Jack once a week to get to know his care worker (who is lovely!) and so that she can get to know Jack before he officially starts. He loved his first visit yesterday and I know he will be so happy there, even though I’m still struggling at the thought of handing him over to someone else. I’m sure it will get easier with time.

We also had a meeting today with some of Jacks professionals and the community nursing team. It’s been decided today that he qualifies for nurse support in the home - this may be a night or two, so we can get some proper sleep, and potentially some afternoons/evenings to give us a break from the medical side of things and be more present for our other kids.

It’s been an emotional couple of days, we’ve also had to increase his meds again as his seizures have been quite bad recently, but hopefully we are making positive progress.

Still a few appointments to go this week - we are exhausted and the mental load can really get on top. The changes make us anxious but we know Jack will thrive in his new nursery, and have parents who are better equipped to cope with the strain when we have that extra support at home.

Also, can we just appreciate how beautiful this little boy is? 😍😍😍

05/07/2026

Celebrating a birthday of a child with a life limiting illness hits us in a strange way.

I woke up in the morning, so grateful that he made it to 2.

Then a little voice crept into my head:

“But what if it’s his last birthday?”

I pushed it aside.
This is a huge celebration.
I allowed myself to enjoy the moments, the whole two years this beautiful boy has been with us.

Then I opened our mail.

A copy of Jacks PAC plan arrived in the post.

For those who don’t know, this is made up of two parts. Information is recorded and sent to the ambulance services where there are details of how much medical intervention we have chosen, should something serious happen to Jack.

It also goes to the police - so that if the worst happens at home, the document means the police are aware and our house won’t be treated as a crime scene.

The other part is our wishes when Jack approaches end of life. From big details such as a funeral to small details like making hand casts and keeping a lock of his hair.

How’s that for timing?

I broke again.

Then I pulled myself back together.

We organised a huge celebration with our family and friends, to celebrate Jack and his big sister Eliana’s birthdays.

The day was absolutely perfect.
I did shed a tear after we sang to him.
A mix of happy tears and tears of worry about an uncertain future.

Families of complex children go through a whole rollercoaster of emotions, the bad and good intertwined and you don’t know which one will hit you from one minute to the next.

But tonight, as I watched Nick fighting to get to Jacks feeding tube, while the little monster shuffled away and giggled at him, I was able to put those thoughts aside and see Jack for what he is.

He is here.
He is happy.
He is very cheeky.

We are so lucky 💙

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St Athan
Barry

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