Help For Harley

17/06/2026

Hi everyone, only me …… 👋

Before I fall asleep and you get too caught up in the football tonight I thought I’d drop you a little update on my crazy world!

I’ve had some more “muscle juice” it’s good stuff, I got a new hat whilst I was in SDH for the day and learnt how to lay down and lift myself off my cot by balancing on the cot sides 😂

I’ve been to 2 birthday party’s, they both had mummy’s soft play set up but because they are friends of hers, me and Hugie got invited 🎉

Hugie got to give baby Eva a cuddle, she’s Daisy’s little sister; Daisy is Hugie’s girlfriend so he’s going to put a word in for me 🩷

I’ve got a new play therapist who comes to the house, she’s really nice, me and Hugie got to empty her bag of toys 👀

I’ve seen Dr James in Southampton and been for physio in SDH.

It was mummy’s birthday last week as well, I didn’t get any birthday cake but I did get to try the jam out of a jam doughnut one day whilst we were at great-grandmas ❤️

Hugie and I play together a lot now, I’ve even managed to learn how to pull some toys out of their boxes when I’m sat in my chair on my feed.

Hugie likes to push me about, usually in Tescos or my pushchair, he’s not a great driver though so mummy and grandma have to stay close by

I’ve found a cute baby looking at me sometimes when I look in the glass on the cupboard door, he’s quite cheeky and laughs back at me!

Peek a boo is a great game too, it must be funny cos I get laughed at.

I’ve started my new feed this week, I don’t have milk now, but another liquid food supplement (still looks like milk to me 😂) doesn’t stop me being sick but does reduce the amount I sick up and it’s not after every feed now which is good 👏👏

Mummy and grandma took me and Hugie to Great Ormond Street today to see Dr Paul (and some other doctors cos I had 3 appointments this afternoon)

Hugie was busy playing whilst I was getting weighed and having my heart checked. The heart lady was nice, I tried to told her hand!

I’m still growing well, I’m 80cm tall and 20lb in weight now 💪

I’m a bit naughty in the car, I try and escape from my car seat, I think it’s funny but mummy tells me off and then grandma usually puts my arms back in the straps 🙄

We still haven’t had a date for my transplant, now Dr Paul said possibly the middle of August but there’s no accommodation for grandma and Hugie so grandma and mummy are looking for places that they can stay whilst me and mummy are in hospital.

At the moment the cheapest accommodation is £6500 for the 8 weeks ……. Does anyone know how to rob a bank to fund this????

Tomorrow we’ve got to get up early again as we have to be in Southampton to see Dr Sanjay at 930!

Hope you enjoy the football, catch up soon, lots of love Harley xx

03/06/2026

Evening everyone

How times flies in my busy world. I didn’t realise it was so long since I last checked in.

Last time mummy and I went to an event with lots of diabetes doctors. I behaved myself most of the time, my lovely nurse Laura gave me a cuddle whilst mummy ate her lunch. I’d only just finished my feed and as usual vomited, but I was too quick for mummy and Laura and she got covered in eau du Harley 🙄 she let me off though cos I’m just so super cute 😬

When we got home, grandma and I went for a sleepover in SDH as I had to be sedated the next day for a CT scan ahead of my transplant.

Great grandma got back from her holiday, grandma and Hugie went to pick her up 🛳️😎

Daddy came to see us for a couple of days, we were meant to go and stay at his house for a week but I got poorly and had to go back to SDH for another sleepover; grandma stayed with me whilst mummy and Hugo took daddy home.

When I got discharged from SDH, grandma took me to the inflatable fun day with Kayshie, Sarah and the boys. I sat in the shade but we all had a great time. We went the next day as well when mummy and Hugie were home.

The weathers been so good, we’ve had the paddling pool out at great-grandmas, the big kids and the little ones have had water fights, I got to try some new soft play inflatable animals 😎🐮

Mummy and grandma took us to Southampton last week to see Lightening McQueen in West Quay, Hugie is “Cars” mad, he thought it was brilliant.

Our boys had a sleepover with us, getting into practice for when Kayshie goes to have her baby.

Sunday we got ready and went to Hugie’s swimming lesson …… oops, it’s half term, no swimming and for once we weren’t late 😂

Mummy had to go to hospital yesterday for a little operation, she’s ok but very sore so we can’t climb over her as we usually do, grandma has to lift us up to her for a cuddle. She’ll be ok in the next week or two so long as she does as she’s told!

Well that’s it for now, it’s nearly 9pm, grandma will sort my feed out and then I can go to sleep.

Goodnight everyone 🩵 xx

20/05/2026

Hi everyone 👋👋👋

It’s ages since we had a catch up, time goes so fast in my little world.

So since I last updated you on how I’m doing, grandma and great-grandma took me and Hugie to Southampton to see my cardiologist, we had a good day out and she was so pleased with me I’ve not got to have any more heart medication as the two holes in my heart are slowly closing, I have to go back in 9 months after my bone marrow transplant for my next check up 👏👏

Mummy took me to physio, I wasn’t very happy that day cos my physiotherapist but me in a stand aid to help strengthen my hips and legs. We’ve got the stand at home so I can keep practicing.

We all went to Theo’s 2nd birthday, he’s our friend from swimming, it was a good fun afternoon 🎂

Great-grandma is away on holiday but she’s home on Friday so I’m looking forward to seeing her 🛳️😎

We went out for dinner one afternoon, I think grandma gets tired of cooking sometimes. I got to look at the menu, one day I’ll get to eat hopefully

I had my diabetes check up, that was good, cos I’m getting big and strong now💪

I had my second immuno what’s it ….apparently this is what’s helping me get so strong, it’s building my muscles up ahead of my transplant.

I’ve seen Dr James in Southampton, it’s always good to see him cos he’s so nice 😊

Kayshie brings the boys round after school some days, Hugie loves playing with them.

I like sitting up playing with our toys, sometimes Hugie and I play together nicely, sometimes we don’t 💙🩵

I’ve started sleeping in some strange positions apparently, not my fault I fall asleep wherever I am 😴😂

Me and mummy are in Southampton this afternoon with nearly 200 diabetes nurses and doctors, mummy’s got to do a presentation, grandma wrote “Harley’s story so far” and mummy has added lots of photos to it. Mummy’s really nervous, but she’ll be ok, I’ve just got to behave whilst she’s doing it 🤞

We’ll catch up soon and let you know how it went.

Take care for now, lots of love Harley 🩵

04/05/2026

Good morning everyone

Oh what a busy few days we’ve had. Daddy came to see us, so me and Hugie have had lots of cuddles 🩵💙

Hugie had his 2nd birthday which meant we’ve been out and about and had another party 🎂🎉🎁

We went to Longdown Farm on Friday which was great, we got to see lots of animals and had a lovely time 🚜🐹🐣🐄🐖

On Saturday Hugie had his birthday party and some of his friends came to play

Yesterday we went to Salisbury races and mummy did really well and won some money, grandma didn’t do so well though so she gave up wasting her money 😂

Daddy’s gone home today but we’re going to see him again in a couple of weeks 👏👏

Today is a restful day and I might have a nap soon 😴

Hope you’re all having a good weekend 😎

Lots of love Harley 🩵 xx

28/04/2026

Evening everyone, I’m still here, anyone missed me???

After our trip to London, we had a few quiet days at home, visiting great grandma every day.

We all went out for a “pre-Christmas 2025” lunch with Gary, Ann and Sophie. Apparently every time grandma and Ann arranged lunch, I wasn’t well; I was this time though and it was lovely to see them.

Mummy and I had to get up really early one day as my doctors wanted me in Southampton for 830am! They clearly lost my previous notes saying I like to sleep lots 😂
We had a good day though, I had to have tests to check my allergies ahead of my transplant.

I got to see Dr James and Zak, they’re lovely, they couldn’t believe how much I’d changed cos I’ve not seen them for a couple of months, I’m getting big and strong 💪

I’ve started pulling myself up when I’m in my cot, grandma says I’ve got monkey feet cos they’re so strong.

Me and Hugie had a grandma afternoon and went out for a nice walk whilst mummy and great-grandma went to bingo. The next day great-grandma came with us as well.

Hugie got to see “our boys” and had cuddles in the car with them.

Hugie went to his swimming lesson on Sunday, then we went into Salisbury to join in the “St George’s” celebrations 😎🏴󠁧󠁢󠁥󠁮󠁧󠁿

We’ve got a busy week ahead, it’s Hugie’s birthday and daddy is here for the weekend to see us; it’s going to be such fun.

Enjoy the good weather everyone, I’ll check in soon (probably when grandma’s eating birthday cake!)

Lots of love Harley 🩵 xx

15/04/2026

I’m home 👏👏👏

Hi everyone, what a trip, I’m not going again unless I really have too !

It was so stressful, 2 appointments cancelled, one consultant wants more bloods taken but asked mummy which hospital she wanted to have them done in …….. uh…. Let’s go for Salisbury or Southampton then 🙄

I had a ride in a real London black cab this afternoon which was good; lovely man took us from the hotel to the car park.

Mummy had to stop at Fleet services on the way home to set my feed up and then we got caught in a massive traffic queue cos there was an accident on the M3.

Eventually we got home, I had grandma cuddles and Hugie had mummy ones.

It’s so nice being able to stretch out in my cot tonight!

Going to have an easy day tomorrow, might even let mummy and grandma have a lay in ….. depends if Hugie got the memo 😂

Sleep well everyone, lots of love Harley 🩵 xx

14/04/2026

Hello 👋👋👋👋👋

It’s only me, thought I’d check in a bit earlier than normal

Mummy and I have been on a road trip today, said goodbye to grandma and Hugie at lunchtime and then set off.

I got to sit in the big seat in the front of the car instead of my seat in the back of the van. I’m not allowed to sit in the back on my own and after 15 minutes I reminded mummy why 🤮🤢

After 2 hours and seeing some very famous sites, we got to London, to GOSH.

We parked up, mummy loaded my pushchair with my bags, got our suitcase out and then set off to our accommodation for tonight. We got there only to be told our accommodation had been changed so that meant another 15 minute walk in the opposite direction to a nice hotel.

Mummy wasn’t too happy as she’d already confirm the accommodation yesterday, bought the parking for 24 hours and had the routes planned for my various appointments.

We eventually got to our hotel for the night. A very nice young man helped mummy with our bags to our room ….. no cot, only 3 single beds 🙄

Mummy and I went off to our first appointment, we had FaceTime with grandma, Hugie and daddy once mummy wasn’t so stressed.

Mummy sorted her dinner once we got back to the hotel.

I’m sleeping in a next-to-me crib tonight, I might be little but even I’m too big for this ….. I’ll manage though, it’s only one night 🤞

Our first appointment is at 9am tomorrow, then 1030, 1130 and 1pm, hopefully we’ll be finished by 2pm then we can get home to our own lovely beds 🤞

Hope you all sleep well, think of me not stretching out much tonight 😂

Lots of love Harley 🩵xx

12/04/2026

Evening everyone, how you doing???

It’s been a funny old week, seems ages ago we were having my birthday/christening party 🎉🎂

Mummy took daddy and old Les home on Monday, so Hugie and I had to be good, I got a right talking too about not messing about like I did a couple of weeks ago; I don’t know what they meant, anyone would think my sugar levels weren’t behaving 🙄

Mummy’s not been very well, she’s got teeth trouble, but getting better now she’s got some medicines, she should have tried my teething powders 😂

We went to the park with Kayshie, Sarah and my boys for a picnic, it was a bit cold but we had a good time ⚽️🛝

I’ve been stretching my legs this week, I even managed to stand up with help from mummy.

We went shopping and grandma bought me my first “real shoes” the lady measured my feet and mummy found the same shoes Hugie had although mine are much smaller than his were.

Grandma had her birthday, that meant more cake for everyone; I don’t get how I’m diabetic and don’t eat food when they all eat cake and Easter eggs without any problems!?

We’ve got a busy week ahead, so many of my doctors want to see me, so I’m going to sleep now, my feed is on for the night, so I’ll wake up with a full belly 😂

Goodnight everyone, take care, love Harley 🩵

08/04/2026

Good morning everyone

I’ve noticed over my busy weekend that I have a lot of new followers so I thought I’d do a quick reminder as to why my grandma set up this page to document my story …..

I was born a couple of weeks early on 1/4/25 in Salisbury hospital

When I was born I was very floppy (medical term is “hypotonia”) and unable to feed.

I had a feeding tube inserted into my nose at 18 hours old.

After 3.5 weeks in NICU between Salisbury and Southampton hospitals it was discovered I had 4 holes in my heart as well.

At 6 weeks old when it was thought I had colic the Drs discovered I had neo-natal diabetes so ended up in hospital for nearly 3 weeks so mummy and grandma could learn how to monitor and control my sugar levels by having lots of injections of insulin everyday.

At 9 weeks old after only 4 days at home I was re-admitted to Salisbury hospital after tests revealed I have IPEX syndrome.

IPEX is a life threatening condition that causes my immune system to fail.

I then spent another 10 weeks in Southampton hospital having tests, operations and procedures to enable the Drs to work a plan on how best to treat me.

During this time my brother Hugo was also diagnosed with IPEX.

IPEX is extremely rare, it only affects boys due to our chromosome make up and only 1:1.6 million boys worldwide.

At the moment Hugo and I are only 2 of 3 children in the country that we know of.

There are about 300 cases of IPEX across the world.

Fast forward to now, I’ve spent a lot of time in hospital, I get lots of respiratory infections, my diabetes is difficult to control due to my size and my stomach finds it hard to absorb my feed.

I have a PEG in situ which enables my feed to be pumped direct into my tummy.

I also have a central Hickman line in situ to allow medications to be pumped into me when required and bloods to be taken when necessary.

I have a sensor in one leg to monitor my glucose levels and a cannula in my other leg which constantly gives me insulin.

I’m having a bone marrow transplant in July (hopefully I stay well til then, if not the transplant will be sooner) and have started my pre-transplant treatment now in preparation for what we all hope will be a successful procedure.

Having the transplant will mean that mummy and I will have to go to Great Ormond street for at least 8 weeks and be in isolation there.

We hope though that grandma and Hugo can come with us and daddy can visit me as well as often as he can.

Hugo’s IPEX affects him in a different way, but our super Drs monitor him regularly to make sure his immune system is still functioning as it should, at the moment he has different symptoms to me which they manage with medications.

We’re looking forward to the spring/summer now so when I’m having a good day we can get outside and enjoy the sun.

We can’t go on holidays or to places where there are a lot of people as we can’t risk getting any more bugs.

Keep watching my story and I’ll keep you up to date on how I’m doing and please share my story with your friends as we will need all the support we can get this summer 💪

Lots of love Harley 🩵💙

06/04/2026

I love my grandads but “grandad Joe” is so lovey to follow 💙

Hello friends, I wonder if I can ask a favour of you all 🤞. I’m going to be 93 years old on May 10th and amazingly so far I have managed to accrue 975k Facebook friends 🥰

The best birthday present would be to reach 1 million by my birthday and I wondered if I could ask you all to help me get there please? I think the way to achieve it is by asking you all to share my posts to your friends and hope they decide to follow along. Any other ideas would be welcomed 🙏

Let’s see if we can do this . Thank you all , sending love ❤️