Help For Harley

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Diagnosed with IPEX syndrome at 9 weeks old

A life threatening/life limiting condition which only affects boys.

300 cases in the world and 1:1.6 million chances of being born with the condition

Well, what a day, what a few crazy days that’s been!Even after the cloud lingering overhead for so long did we expect to...
09/10/2026

Well, what a day, what a few crazy days that’s been!

Even after the cloud lingering overhead for so long did we expect to have to ride the storm of the last few days.

A few days ago our big little trooper was “me help” carrying Harley’s feed pump and we knew nothing of what would happen so quickly in the following days.

When someone is unwell it’s easy to think “yeah, they need X, Y and Z, that’ll sort them out” never did we expect Hugo to need the whole alphabet!

He has done so amazingly well since being admitted Wednesday afternoon, he’s had to endure more things in 48 hours than some of us do in a lifetime.

Hopefully none of you will ever have to meet our wonderful Dr James, but the way he cares for the boys, Chloe and myself is second to none.

I don’t think he ever switches off “when I woke up this morning I thought there were two options, but the more I thought about it I knew really there wasn’t”

Dr James and his team have worked their magic on Hugie for the last few days and particularly today, he’s along way to go on his road to recovery, but already there’s a glimmer of cheek coming back “go away” seems to be a favourite saying today. We’ve decided not to take it personally as within seconds he’s calling you back to “help please”

He made it clear apparently when he went to theatre that he wasn’t impressed in the cold temperature but the “wow” to the toys took his mind off of it.

Harley’s been Harley whilst a lot of attention has obviously been on Hugo.

Harley’s not bothered though, his mischievous character shines through more and more each day; turn your back, hear a noise, look round and there he is causing mayhem.

Takes himself off on a bum shuffle round the ward, he doesn’t care if he’s in anyone’s way and thankfully he’s so well known to the staff they don’t bat an eyelid

We’re going to be in hospital for approximately 6 weeks, all depends on how Hugo responds to his recovery 💙🙏

It’s now tomorrow so I’d best sign off and get some sleep before the sun rises and the boys wake up.

Thank you all again for your kind words and support

Will update you tomorrow on the days antics

Lots of love Sarah x

09/10/2026

We’ve one very sleepy and sore little boy back on the ward with us.

Waiting on a visit from one of the surgeons.

Thank you all for your kind words and support, today more than ever

Will update again later as usual

Sarah x

09/10/2026

Just to let you all know, we’re still waiting to go to theatre, just been told another 45/60 minutes 🙏💙 xx

Good evening Today’s been a day of mixed emotions, laughter and tears mainly. After I finally went to bed at midnight, I...
08/10/2026

Good evening

Today’s been a day of mixed emotions, laughter and tears mainly.

After I finally went to bed at midnight, I woke to Hugo crying at 3am and went into his room.

Chloe was with him, “am I pleased to see you, he won’t settle”

So I sent her to bed whilst I took care of Hugo. Every 10/15 minutes “mamma, mamma” he either needed a drink or a nappy change.

Hugie’s was on an IV fluids drip overnight as he’s not eaten for 4 days and although his fluid intake has been ok, he was getting dehydrated fast.

By 645, Harley decided he’d slept enough so he joined the not so wide awake club 😴

I had to wake Chloe at 945 when Dr James came to see us. He had the results of some of Hugo’s tests from yesterday.

We met James originally in June 2025 when Harley was first admitted to Southampton. We’ve a great team of Drs looking after the boys, James and Nicola in Southampton and Chris in Salisbury are our primary consultants.

Be it an email or a phone call, we can rely on them and trust them immensely, so when James told us the results that he had and his suggestion for the next step of Hugie’s treatment we knew that was what was needed.

For 15 months we’ve carried the IPEX cloud that hung over Hugo, knowing that one day it may get darker or start to rain.

With Harley it never got darker, it just started to rain 16 months ago, thankfully his storms pass and we are left with a daily drizzle to manage.

The cloud over Hugo has got darker over the last 3 weeks, when Harley was admitted to PICU, Hugo wasn’t 100% well but we put it down to him having a bug the same as Harley.

The rain started last week, first a drizzle and then the storm gradually worsened.

Hugo’s got to have surgery tomorrow, he’s having two procedures and one in particular will have a huge impact on all of our lives over the coming months.

He’s our little trooper and now it’s time for us to dig deeper than we ever have to make sure our beautiful son/grandson is back on his feet, being the cheeky, adorable little boy that everyone loves as soon as he can be.

So please, we ask that at lunchtime tomorrow you take a minute and pray or send positive thoughts to “Hugie, Woogie, Woogie, Woo”

Love to you all, as soon as i have an update to post I will

Sarah x

Good evening from the bottom end of the A36 🏨What a day it’s been ……….Started at 2am when the phone rang “I’m on my way ...
07/10/2026

Good evening from the bottom end of the A36 🏨

What a day it’s been ……….

Started at 2am when the phone rang “I’m on my way home mum”

Some of Harley’s meds ran out and as they’re specially prepared for him, they aren’t readily available in the hospitals

3am, still awake waiting for Chloe to text to say she was safely back at SDH

4am “mamma, mamma” off I trotted down to Hugo’s room and sorted him out

Then back to sleep til it was time to call Chloe for the morning update as she was leaving SDH at 8am to head to Southampton

Few chores to do at home this morning whilst giving Hugo lots of TLC.

Finally got to Southampton at 1pm, met in the car park by Chloe and Harley, nice surprise 🩷🩵

By 130, Hugo had seen Dr James who took one look at him “I’m going to have him admitted and we’re going to do “X, Y and Z then review again tomorrow”

Hugo wasn’t even bothered about seeing the copter, he’s watched films or slept all afternoon.

Harley’s just Harley when the Drs aren’t around, he decided to move his suitcase and start to empty it earlier 😂

Consultants did their best to try and get a double cubicle for our little fighters, but we’ve got two cubicles in the corner of the unit, so nice and private for us.

There’s always a favourite nurse or two in each hospital and today she did her best for us (IYKYK) for which we are very grateful.

Chloe had a quick trip to Asda to get dinner for this evening and PJs, dressing gowns and a few treats for the boys to try and encourage Hugo to eat.

Both the boys are asleep, I’m off to the a vehicle shuffle now there’s better parking for the sunshine van and our car

Will keep you all updated tomorrow on how our troopers are doing 💪💪

Sleep well, hopefully we will 😴

Sarah x

Evening ….Not much to report from SDH.Been a quiet day for us, lots going on in the background though between the consul...
06/10/2026

Evening ….

Not much to report from SDH.

Been a quiet day for us, lots going on in the background though between the consultant at SDH and those in Southampton.

Heading back down the A36 tomorrow, hopefully only for a few days as Harley’s Drs there are missing him 🙄😂

Hugo’s not too good at the moment, fine in himself but a few issues that will be dealt with in Southampton as well.

Short and sweet message but not much to report

Sleep well everyone, I will when I get there 😴

Sarah x

Morning allJust a quick update on our crazy life 🤯Harley’s had to go back into hospital, hopefully only for monitoring a...
06/10/2026

Morning all

Just a quick update on our crazy life 🤯

Harley’s had to go back into hospital, hopefully only for monitoring and some more tests as he had a couple of issues over the weekend that need checking out.

Hugo and I will head off to see Chloe and Harley later.

Please, we ask again for no direct messages, we’re very grateful and couldn’t keep going like we do without everyone’s support, but once again or focus is on the boys.

I’ll keep you all posted this evening.

Have a good day, stay safe

Sarah x

WE MADE IT!!!!Good evening everyone, at long last we’re all home 👏👏👏👏I had FT with the dynamic duo in Southampton this m...
01/10/2026

WE MADE IT!!!!

Good evening everyone, at long last we’re all home 👏👏👏👏

I had FT with the dynamic duo in Southampton this morning and told “don’t rush down mum”

But after doing some chores and “oh can you pop to B&M for me please” Hugo and I set off on our daily drive 🚌

Harley was he’s mischievous self this morning after a poonarmie 🤮

Playing peek a boo under the blind on the ward, getting his foot stuck in his yoto box and generally just being Harley 👏👏

Got to the ward just before 1230 and by 1240 Harley and I took the first load of toys and bits to the sunshine bus (van)

I mentioned as we walked passed on of the hospital shops the other day that I like a pumpkin stack ….. ones now sat in the hearth at home; thank you Chloe, Hugo and Harley 🩷💙🩵

Quick trip into Ronald house to get Chloe’s suitcase and back to load that up 👏👏

Then back to the ward ready to start his lunchtime feed and pack the last few bits from there.

The nurses were waiting on some paperwork so they said they’d call Chloe when they had everything ready for Harley’s discharge.

Back to RH after loading up the bus with more stuff; cleaned their room and got the call “we’ve everything ready now”

Hugo and I waited in the van whilst Chloe and Harley went back to the ward to get the necessary bits and pieces.

Keys then handed back to RH and it was time to head back home (via great grandmas)

The company wasn’t great on the way home….they all fell asleep so I just turned the music up 😂

Had an hour with my mum and grabbed a Toby carvery on the way home.

Harley’s very sleepy, he was in bed by 630. Can’t say the same about Hugo but he’s a night owl but he’s in bed now.

So nice knowing everyone’s in their own bed at home tonight.

Hopefully Harley will settle back into home life again quickly and continue to get stronger everyday 🙏

Follow up appointments are scheduled for the coming weeks but are aim now is to get back into our routine and make sure everyday counts for our wonderful boys.

Thank you so much for all the support you’ve given us all over what was a very long and stressful 2 weeks

Sleep well, I know we will

Sarah x

Good evening from Amesbury, only me and my big pickle home though 🙄My sleep over was horrendous, the sleep bit was defin...
30/09/2026

Good evening from Amesbury, only me and my big pickle home though 🙄

My sleep over was horrendous, the sleep bit was definitely missing 🤦🏻‍♀️

Harley has a different glucose monitor now and it plays more tunes than I don’t know what. His sugar levels are still like a heart beat and the monitor is very quick to tell you and it doesn’t care what the time is!

I’m not a great sleeper, I can always hear the pin drop where as the house could fall down and Chloe would still sleep 😂

So we’re now told “discharge tomorrow”

Harley had his muscle juice infusion this afternoon so we’ll see if that helps his recovery 🤞

I forgot last night that the neuro Dr had been round and spoke to Chloe.

When Harley was first sick 2 weeks ago,he had a MRI. They showed us the scan and yesterday the Dr was amazed how Harley is recovering “only 1% of patients return to ‘normal’ after being so sick”

He truly is our little fighter, he’s got to have another scan in 5/6 weeks and then see the Dr at an appointment that was already scheduled in November.

I met Harley’s SALT nurse this afternoon to discuss further ways to encourage him to eat safely, got a few new ideas so we’ll be trying them this weekend 🫐🥦🥑

Chloe’s packed up her room in Ronald McDonald this evening ready to come home tomorrow. Until Harley’s in the sunshine bus we won’t be handing the keys back. We did that last year and had to get another room so we’ve learnt now not to rush “check out”

It’s bedtime now though, I’m sure it will be better than last night 😬

Here’s hoping night 14 is the last one this time round 🤞

Sleep well everyone, watch this space for an early update tomorrow hopefully

Sarah x

Greetings everyone from SouthamptonMy turn to sleep over tonight with our pickle. He’s had another good day, sugars sort...
29/09/2026

Greetings everyone from Southampton

My turn to sleep over tonight with our pickle.

He’s had another good day, sugars sort of ok, but still being tweaked to get them more stable.

Harley had to have a blood test this morning, real little trooper having another cannula in his foot, had to keep it in for a couple of hours as blood had to be taken several times with medication administered in between (part of the process for this particular test)

Hugo and I got here at lunchtime as we had a few things to do in Amesbury first.

We all had a play in the playroom today as well as in our cubicle.

We’ve been out for a walk a couple of times, the boys are funny, they hold on on the lift, they know how temperamental these lifts are 😂

Was nice to see Nat and Charlotte from the green team as well as they did a transfer from Salisbury to the ward 💚

Chloe and Hugo left quite late as we didn’t see one of the Drs til late but Hugo was super excited when he went to bed and realised mummy was staying with him tonight 💙

Harley’s fast asleep now with his story box playing in the background for a while.

Infusion tomorrow and then we might be going home, but we’ll get excited about that if it happens 🤞

Hope you’re all doing well

Catch up tomorrow

Sarah x

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