Jacks Journey

07/02/2026

Jacks feed pump failed and I was already having a bad day before that.

Thank god for nanny and grandad, gravity feeds take ages! Grandad took over and nanny gave him a manicure 💙

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 💙

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 💙

13/01/2026

When reality slaps you in the face - medical parents will truly understand this.

Immunisations - this is not a should I/shouldn’t I/anti vax post.

All of our children have been vaccinated.

Many people suggested Jacks condition was a direct result of vaccinations (which he hadn’t had at that point anyway.)

After Jacks 8 week, 12 week, 16 week and 1 year vaccines he ended up in hospital - the most recent one was a trip to resus.

I have battled and fought in my head about what to do.
Sought advice from many different people.

The bottom line is that Jack’s life is at risk whatever we decide to do. So when we were invited for his 18 month vaccines we decided to go ahead to try to protect him as best we can, they are booked for this afternoon.

This morning, Jack had a very intense episode of Infantile Spasms, his ketones are within range but on the lower side for him.

I spiralled, as I do, I cried, and then tried to contact every professional I could in the hope they would suggest postponing them.

After calming myself a little, I realised that whether it’s a good or bad seizure day, Jack is likely to react as he always has. So I decided to still go ahead, and thankfully he is booked straight into the hospice for three nights afterwards, which means more eyes and a doctor on site should something happen.

Life as a medical parent isn’t just what you can see - the tube, the seizures, the special equipment.

It’s those decisions that feel impossible.
It’s the guilt when something goes wrong.
It’s the constant fear of the worst scenario.
It’s looking at your baby and wishing they didn’t have to cope with so many different struggles.

It’s exhausting. All I have to keep reminding myself is that any decisions we make around Jack’s care, is all in his best interests and out of pure, unconditional love 💙

04/01/2026

🖤

For those who aren’t fully aware of his condition, Jack has a rare mutation of the PPFIBP1 gene.

We each have two copies of every gene - when Jack was taken into intensive care we were all tested for genetic conditions.

It turned out that I carry one faulty copy of the gene, and Nick also carries a faulty copy. Having one mutated copy of the gene comes with no symptoms, however it meant that each of our children all had a 25% chance of inheriting two faulty copies. One from myself, and one from Nick.

Our first three weren’t affected, so we had no idea until Jack had his diagnosis. Jack unfortunately inherited two faulty copies of the gene.

It’s a rare condition affecting only 1 in 500 million - and Jack is the only known case in the UK.

The condition is devastatingly life limiting which means we are on borrowed time - the grief hits us every day but we just keep going, so that we can keep our boy happy and safe, and ensure his brothers and sister get to enjoy the best life possible. I won’t pretend it’s an easy thing to do - but any parent in our situation would do the same 💙

27/12/2025

I realised we haven’t posted in Jack’s page for a while.

The last two months have been wild, but thankfully in a positive way!

Jack is doing amazing - since we started the Keto diet in June, our last emergency hospital trip was in July, which is a far cry from our fortnightly admissions over the first ten months since his diagnosis. We haven’t required any rescue medications at home since October.

Developmentally - we are still where we were since our last update. Jack can sit for brief periods but still needs someone with him as his strength can vary.

We still manage regular seizures and we have had a few breakthroughs with his Infantile Spasms which can be disheartening and raises our anxiety levels - but on the whole we have seen a marked improvement.

And some more news..

As most of you know we have spent the last two years living in a construction site. We started building an extension on our home before we even knew we were having Jack - our property had the potential and we wanted more space for our (then) three children to grow up in.

After Jack arrived and we had his diagnosis - the extra space we wanted, then became an urgent need, his equipment is getting bigger as he grows, and we had one tiny living room for 6 of us.

Jack has a huge P Pod to rest in, a seated support chair, and a standing frame.

We get 800 medicine syringes delivered each month, 120 feeding sets plus so many other bits we need to keep our boy safe and help him thrive.

We didn’t have space for even a small dining table so we all had to eat on the sofas.

As you can imagine, life became really overwhelming and my mental health plummeted - I genuinely felt like I was suffocating in a tiny space and the mum guilt of not having room to ensure Jack’s physio needs were met was such an awful feeling.

Unfortunately, due to Jack’s care needs I had to make the decision to give up work - we suddenly only had one income and the building works were at a standstill.

Even after remortgaging our home we still couldn’t finalise the house as we were limited on funds.

From the middle of December everything changed - and very fast!

Our wonderful friends and family rallied around to raise money to help towards the building works with a charity car wash. An event was also held at a local pub where more money was raised, and a wonderful small local charity purchased Jack’s P POD and surprised our older children with new bikes.

I decided on a whim to send the poster for the car wash to our local councillor, asking if he would be so kind as to share this within his community.

This is where it all completely spiralled. Within three days, with the help of a local businessman who, bless him, doesn’t wish to be named, a huge team of contractors came into our home and completely transformed it.

They completed our boys new bedrooms, which means we now have space for Jack to have his own room.

They built a beautiful new bathroom - total luxury after having only a shower room for two years - we are loving having a bath back!

They transformed our driveway, moving over 4 tonnes of whatever rubbish we have built up over the last two years, and brought tonnes of stone to drop and level off to make getting Jack to the car much safer and easier.

We have had electricians in completing everything we needed, putting in extra sockets for Jacks electrical equipments, lighting outside for safety etc.

We now have a fully functioning living/dining area which also fits Jacks seating equipment and we no longer trip over it!

We even got gifted a real Christmas tree which looks beautiful in our new room.

Christmas morning we woke up and all sat around opening presents, last year it was impossible to move with all the toys and wrapping paper, it was so different this time.

We usually have to go out for Christmas dinner - at a ridiculous cost and the added stress of getting four kids dressed and out by a certain time.

This year, we stayed home in our pyjamas and had our own home cooked Christmas dinner around our dining table.

The gentleman who arranged all of this, said he wanted us to have a lovely Christmas, but what he did has stretched far beyond that, it has genuinely changed our lives for the better.

We have been fortunate enough also to have friends and family taking the time out of their busy festive schedules to come to the house, help with cleaning, organising, building furniture and generally just supporting us and helping to get everything finalised.

The contractors who have been in our home have gifted us their time and labour out of the kindness of their hearts to ensure we have a home that is comfortable and practical, for not only Jack’s needs, but ours as a family too.

I am writing this feeling lighter, blessed and so thankful that there is such kindness within our community 💙

27/10/2025

They said he wouldn’t, but he did.

Something incredible happened today, Jack sat unaided for the first time!

What a clever boy 👏 we are always so proud of you little man 💙

15/10/2025

This one had us worried yesterday.

He was up through the night vomiting, which for any child is risky due to the risk of dehydration.

He wasn’t able to keep any of his medication down, or his milk. His milk is all he has for nutrition but it’s also vital for keeping his body in ketosis - if his ketones drop too low then his risk of life threatening seizures increases. Because he also couldn’t keep his medication down that made the risk much greater.

Yesterday was spent regularly checking his blood levels to make sure his glucose stayed stable, we slowed down his feeds so all milk was given over two hours at a time - it felt like he was constantly hooked up to his pump.

We had dioralyte on standby if he continued to bring up his milk, and his dietitian advised that if he couldn’t keep that down then it was a hospital admission.

He had more seizures and infantile spasms than normal but he absolutely bossed it, eventually managed to keep his feeds and meds down, and his glucose stayed at the correct level.

His ketones are still on the lower side but they’ll come back up eventually.

I’m thankful we have so far managed to avoid a hospital trip - it feels so strange not spending every other week on a ward, Jack is the most resilient little man and I’m so proud of him 💙

10/10/2025

Please read and share! My amazing family are climbing Pen Y Fan to help raise funds for my boys sensory room 😍😍

Raising funds to support Jack and his family through his rare and life-limiting conditio… Jodie Hopkin needs your support for Climbing Pen Y Fan for Baby Jack

26/09/2025

What a day it’s been!

Up at 5am to get prepped for a busy day of appointments.

I had to prep two feeds for Jack, pack one of them with ice so it didn’t spoil before he had it, get him up, dressed, medicated and bloods tested.

Sorted the other three kids ready for the day, managed to get myself showered and even brushed my hair 🤣

Out of the door by 7.45, quick pit stop for fuel and to collect mum.

Jack had an appointment with Orthotics at Rookwood Hospital - he’s been given some lovely shoes to give more ankle support to see if we can get him confident weight bearing on his feet.

Then we had a phone appointment at 10.30 from a support worker specialising in blind children - I did not expect to almost break down in tears during that call but hey ho.

Then straight to the Heath for Jack to have blood tests. Every three months his liver and kidney function needs to be checked as the Keto diet may pose a risk to those organs.

It was awful watching him get so upset (he does not like to share his blood) - I am so grateful to my mum for always coming with us to the hospital for support - I wouldn’t be able to do it by myself and Nick works long days so it’s difficult for him to join us.

So the stress of Jack having his bloods taken then triggered a seizure as we were leaving the hospital. He had rescue medication but was quite unresponsive after - I was concerned about giving a second dose if needed as it can affect his breathing even further, so we were about to make our way over to A&E but thankfully he woke up and was more responsive.

Before his appointments he was having a few small seizures and an episode of spasms, alongside the rescue medication this little boy is absolutely wiped out and enjoying a nap.

Mummy needs a nap too but can’t take eyes off him at the moment.

This is quite often how our days can look - I can’t always reply to messages or make arrangements to visit people - this is literally what life is like for us.

Its hard.

It’s exhausting.

It’s filled with constant stress and worry.

But we keep going, keep getting him the best care possible and keep loving him with all our hearts 💕

22/09/2025

The press have been reporting on Jack recently, helping us get our story out there.

As expected, we have had a few very unpleasant comments.

I won’t retaliate to these with emotion, or anger, as it just isn’t worth the very little energy I have. The people who think it’s okay to say awful things about my beautiful little boy, clearly are lacking in any kind of love in their lives.

Jack is surrounded by so much love, and although his life looks a little different, he is much happier and luckier than these people 💙

He may only have a year to live 💔