Jeffreys Journey

18/01/2026

🧡 Brain Infusion #118 🧡

Last Wednesday Jeffrey and I headed to Manchester for our loves first treatment of 2026. Some traffic delays however we were the first on the ward and first things first it was off to be weighed. Nice to check in with the nurses to see how their Christmases were and it looked that a little weight was put on. We went back to the room and as he was having his observations done we spoke about how he’d been. In himself really well however his seizures and dystonia both ramping up again. He’d had no tweaks to his medication for 6weeks so I was told as his neurologists number 2 wasn’t in one of the other doctors would come to see me. All in all they were happy for him to get his treatment.

For those who have started following Jeffreys page recently he receives an Enzyme Replacement every fortnightly, previously at Great Ormond Street but now he receives it at Manchester.

Jeffreys device was accessed quite early (for my trip anyway) and I was told that our little porker is now 27.1kilos meaning his weight has rocketed which is fantastic 🙌🏻 We thought he had put weight on as I feel it when lifting him to get him downstairs but his dad is also feeling the weight he has out on. Absolutely not complaining and we hope he keeps gaining! I nipped out to get some food and when I came back with it his amazing neurologist was on the ward so we had a catch up. Everyone is so happy with how well he looks at the minute which makes us feel so better especially following a conversation we had last year when he was underweight following his surgery and everyone was really worried. At one point they were worried that if he caught an infection he may not be strong enough to fight it which really scared us.

We spoke regarding his seizures and dystonia. They all know he struggles with one and when we get on top of that the other flares up so we often tweak one medication and then weeks later we tweak another. Due to Jeffreys big weight gain his consultant said that clearly the meds aren’t working as they should. So this time we would tweak one of each. His Lacosomide for seizures would be upped to a dose straight away and then the Clonidine for his dystonia would be upped over three weeks.

All in all it was a smooth day and we were discharged just after 5pm. We slowly made our way to the car park as we were in no rush as it’s manic trying to get out of there and also tea time traffic in Manchester. As long as he has received his treatment that is the main thing and it doesn’t matter what time we get home. So fingers crossed the increases help and overall (touch wood) Jeffrey keeps shining like the bloody star he is 💙 See you in two weeks Manchester 🧡


Sheryl Lawson

04/01/2026

Last weekend Jeffrey had his first weekend respite at Derian House 💚 For those who don’t know, Derian House is a childrens hospice offering respite and care to children with extremely complex conditions. This lifeline is one we are truly grateful to be able to access. The care they provide is absolutely fantastic and they now know our love so well! Following any respite stay we get a call to see if they can improve anything and it’s always a solid no!

We dropped Jeffrey off on Saturday morning and as we got to his room we were greeted to the big boy bed he was to sleep in with gorgeous Christmas bedding and some lovely Christmas pressies at the end of his bed 🎅🏻 After he was checked in and all medications checked and double checked we were sent off so he could join some of the other nurses and children for activities. He went on to do arts and crafts with Donna and she helped him to paint a gingerbread man and he did an amazing job! Later Donna also got him stretched out on one of the bean bags listening to music.

On the Sunday following a lie in Charlotte took him in the hydro pool which he loves and they know is so very good for children with his condition. They sang row row row your boat and around the garden. He later did some colouring before watching the film The Snowman with his pals in the lounge. A lovely day and then in the evening I got a call to say he’d needed to have rescue meds for a big seizure which he hasn’t needed for some time but he was absolutely fine afterwards.

He was checking out on Monday and it was a very early check out as his Dad was taking him to Manchester for his fortnightly treatment. All in all he had a lovely stay which means so much as there are times he has been and his seizures or dystonia have been constant. I know I’ve said it before but we are so very lucky to have been able to access the amazing care that Derian House provide. Whenever he has a stay and we drop him off and the different nurses pop in you can genuinely see just how much they love him and that not only puts us at ease but means so much. It’s not easy leaving your child at first with strangers and we still would rather him home with us but he is honestly in the very best care 💚 Thank you so much for his lovely presents, including a new brush (we all know Jeffrey and his mad bed hair) and of course his journal which Andy jokes that’s my favourite part 😂 💚🧡


Sheryl Lawson

31/12/2025

🧡 Brain infusion #117 🧡

On Monday Jeffrey and Daddy headed to Manchester for our loves fortnightly treatment. This trip was his last one of 2025 and we were both planning to go, however Andy took him on his own. Normally it’s on a Wednesday but due to holidays they juggled the kiddies around. An early set off as Jeffrey was to be picked up from Derian House and with hardly any traffic they were on the ward super early. They also saw two families we don’t always see and one who I’ve met but Andy hasn’t so that was a lovely treat. They even got to see one of the nurses who doesn’t work on a Wednesday so that was also lovely!

Normally when it is my day the nurses will weigh him however as it was busy Andy said not to and he will be weighed when I go in two weeks. When I lift him I can feel the weight he is putting on and Andy has also said he’s noticed it. So it will be interesting to know how much he’s (hopefully) put on as it will be 6 weeks since he was weighed. The only reason why I like him to be weighed is to know that what we are doing to keep his weight up after he went so thin and gaunt looking after losing 4 kilos last year is still doing the trick. Although you can see in his face with how well and filled out he is now that it’s working.

The doctors and nurses are all so happy with him at the minute and keep saying how well he looks in himself. Such a relief to know especially when we were told how worried they were previously. Thankfully back at the time we were never told this as that would have made us worry so much more. His seizures and dystonia are still present however no changes to his medication are being made at this moment.

All in all everything ran very smoothly, his infusion was successful and the lucky ducks got an early leave so were home a lot earlier than usual! So that is a wrap for 2025 and we will see you Manchester in 2026 🧡


Sheryl Lawson

25/12/2025

Wishing everyone a Happy Christmas from our house to yours 🎄 ❤️
Sheryl Lawson

12/12/2025

Please can we ask our family and friends to once again like and or comment on White Ash Primary School photo of their Christmas tree 🎄 If you click on the photo itself to like and comment.

Thank you ###
Sheryl Lawson

White Ash Primary

09/12/2025

The raffle that Accrington Stanley Supporters Trust is being drawn this Thursday 11th December. I can’t thank people enough for buying their tickets and donating prizes honestly you’ve been amazing.

For those who don’t know the proceeds will be split:
40% Derian House
40% Jeffreys Journey
20% Accrington Stanley Supporters Trust

We are grateful as always for the support for Jeffrey and our family. There are two other amazing causes who will also benefit from this raffle. Accrington Stanley our local club and Derian House is a hospice which offers care, respite and end of life care for children with extremely complex needs. Care and respite that our love and family has been so very lucky to have access to.

I have 3 and a half books left to hand, £1 a ticket, which I would love to sell to support not just Jeffrey but the two other amazing causes. If anyone would like to get a ticket that would be amazing and I would really appreciate it! There are some bloody fabulous prizes up for grabs and you’ve got to be in it to win it! It doesn’t need to be cash you can message and I will send details to bank transfer.

I just want to say thank you again to everyone who has helped sell tickets, who have purchased them and of course you lovely lot who donated vouchers and prizes!

Lots of love,
Andy, Sheryl & Jeffrey ###
Sheryl Lawson

23/11/2025

🧡 Brain infusion #113 & #114 🧡

A few weeks ago Jeffrey and I headed to Manchester for our loves fortnightly treatment. A tad of a stressful drive over however after dumping the car on double yellow lines as there were no parking spaces (we have a disabled badge and going back once Jeffreys device was accessed to move it ) we made it to Willink Ward in one piece.
First thing first it was weigh in time. Jeffrey is now weighed once a month on my infusion where before he was weighed fortnightly (which I asked for) It has gone to monthly as if his weight hadn’t increased or had slightly dipped I was getting very upset as we’ve been doing everything we can to get his weight up. The nurses and dietician saw this and said no, you are putting too much pressure on yourself so we will do it once a month on your infusion day. Following this we headed to our room to get Jeffreys observations done and get him settled.

Everyone was so happy with how he looked in himself, how his seizures and movements were calmer, albeit not gone but how amazing he looked in himself. We also decided to take a break from one of his nightly sedation medications, melatonin to see if it would help more after a couple of weeks. Once his device was accessed I popped to grab a lunch meal before having a snooze on the bed with him. Before the infusion was finished and his flush was administered I was woken by the dietician. She had no intention of popping in that day however after the nurses told her his weight she couldn’t help herself. The month before Jeffrey was 24.5kilos and that day he weighed in at 25.8kilos 🙌🏻 She simply said how well we were doing and of course we were over the moon with his weight gain! Looking back at pictures of how gaunt he looked to now and how full in the face (and belly) we are so proud of our little chunk!! I’ve included a photo which shows Jeffreys weight fluctuating. You can see how low it dipped following his surgery to where it is now.

Before we left the nurses came in to measure Jeffreys height. I know how heavy he is getting and how long he is as I bum crawl downstairs every morning with him. Our little love is now 4ft3!! So not far off his 5ft2 mummy! Of course the nurses insisted on measuring me also 😂
A mega late trip home due to traffic but all in all a good day!

Last week Daddy took Jeffrey and once again the nurses were so very happy with him. His movements and seizures still present but not at a point we would tweak any medication. Very vocal prior to the call from the nurses to check in he was well enough for treatment and then of course he didn’t entertain them 😂

All in all, all of the professionals he is under are very happy with where he is at currently. We relish this as you never know when life will hit you. We keep our fingers crossed it stays this way as every one knows that we follow our loves lead ❤️💙


Sheryl Lawson

08/11/2025

When Jeffrey broke up for half term he came home with the WOW of the week award for his efforts at hydro and his hard work at Halloween pre writing ⭐

Mixture of a week starting with a class trip on the Monday to Townley Park which has a fantastic accessible park. In an ideal world there would be an accessible park in every town, however we are very lucky that we live close to one. He enjoyed the swing and roundabout and a lovely trip out to start his last week of school.

On Wednesday it was time for our loves fortnightly treatment and daddy took him for
🧡 Brain infusion #112 🧡
All went really smoothly and the doctors and nurses were all so happy with how well he is looking at the minute and just how fuller in the face he is as he is putting the weight on!

Working super hard back at school in Halloween pre writing and the activities that are adapted so the children maintain their skills is just fantastic. Of course our little love works hard and he is such a trooper! Then on the Friday floating independently with the help of his neck float at hydro and wiggling around in the water. Hydro is amazing for children with Batten Disease and for Jeffrey it really relaxes him when his Dystonia is bad. Not just relaxing as they also have little workouts including one that you place his feet against the side of the pool encouraging him to kick off and he absolutely smashes that!

Seeing all the lovely pictures of the activities Jeffrey does when at school and not with us makes our day. Seeing and hearing just how hard he works at the various activities and does so very well just makes our hearts burst even when struggling with seizures and is a little tired at times. You boy are our shining star 🌟 💙


Sheryl Lawson

21/10/2025

Last Tuesday we took Jeffrey to Derian House as he had a few days respite. We were the first to arrive to check in so a lot of the nurses popped in to see him which was so lovely! The week before due to how his seizures had been we weren’t sure if he would be able to make this stay however as they’d calmed massively due to the medication increase we hoped he would be okay.

After we left our love he did arts and crafts with Lauren and made a lovely Autumn Wreath which will be going in our front window for sure! That afternoon he got a visit from the lovely therapy dog Ted who has popped in to see him a couple of times now.

On Wednesday he did some Halloween crafts with his hands which he was super chilled for. Following that they ran him a nice bubble bath to relax in then he listened to some nursery rhymes on the piano with Racheal and some music with Josie.

On the Thursday it was an afternoon swim in the hydrotherapy pool with Caroline. The staff know just how good the hydro pool is for Jeffrey so they love getting him in it and on previous stays if his dystonia has been heightened they get him straight in knowing this will help to relax him.

On the Wednesday morning I had received a call to see if we were okay with him being taken out for rebound therapy that afternoon, which of course we were absolutely fine with as he really enjoys this at school. However later that afternoon I received a call that he’d had to have rescue medication due to his seizures so he was relaxing comfortably in his bed.
Overall they had ‘an amazing week with the boyo and he’s been super busy’ which they said when they emailed over the pictures and it truly made us so happy! Especially as his last visit wasn’t so good due to seizures and dystonia.

Daddy went to collect him on the Friday morning with a little drop off also which we will share at a later date. So pleased that he managed to enjoy this stay. All of the staff are so lovely and are really getting to know him so well so we are very comfortable leaving him, which is hard for us at the best of times. He was sent home with his crafts, his diary of activities (with extra copies of the photos for mummy) and a couple of goodies which had been donated to the hospice.

We love to share his visits as when you hear of a hospice you sometimes think the worst. The facilities and care that Derian House give to children and young adults with extremely complex needs is truly amazing and we are truly grateful to be able to access it 💚



Sheryl Lawson

10/10/2025

🧡 Brain Infusion #111 🧡

On Wednesday Jeffrey and I made the trip to Manchester for our loves fortnightly treatment. As we reached Bury it popped into my head that I hadn’t packed the extension which attaches to his button for his medication. I rang Andy in a panic who got in touch with the nurses to see if they could source one or if he would need to come out of work and bring one for us. I was running late anyway and when we arrived on the ward I was a woman on the edge, then realised I’d left a bag and wasn’t sure if it was in the car or next to it. Leaving Jeffrey to get his observations done I ran back to the car and thankfully I’d left it inside the car. Back on the ward the nurses talked me down, had sourced an extension set and then popped into the room with a brew and biscuits to try and calm me.

In himself, Jeffrey had been well enough, his myclonus still present but so much calmer since we upped one of his medications the month before. However his seizures have been ramping back up, clustering requiring rescue medications and myself needing to collect him from school instead of being put on the school bus. One of the neurologists popped down to go through it with me. Something needed tweaking as it wasn’t due to being unwell that they were spiking again and could possibly be that he has been gaining so much weight. With an upcoming Derian House stay I also mentioned this as if he is as he is now it wouldn’t be worth sending him as we’d be called over as rescue meds have been needed nearly daily and if he requires more before reaching the 24 hour mark an ambulance needs to be called. She left saying that before we left a plan would be put in place.

Our love was weighed and once again has put weight on and our little porker is now 24.5 kilos 🙌🏻 Not much of a gain but a gain so we were very happy! All ran smoothly thankfully and before we left the neurologist popped back down to say that we are to up his Lacosomide from 8ml twice a day to 10ml over the next two weeks. Fingers crossed this increase starts to do the trick and Jeffreys little body gets a bit of a break.

All in all the nurses were so happy with how well he looked and kept commenting on how grown up he looked and of course commented on his snazzy haircut 💙 See you in two weeks Manchester 🧡



Sheryl Lawson

22/09/2025

🧡💚❤️ Raffle tickets now available 🧡💚❤️

We have been absolutely blown away with the support of donations towards this raffle and we have a fab variety of prizes!

A variety of wines and spirits

A variety of vouchers some of which are:
Northern Delights
Lash 'Em: Makeup, Beauty & Aesthetics
The Little Lancashire Village

Tiger Lounge Accrington
Accrington Golf Club
A 3 hour house clean
A 3 hour removal service supplied by Teal Furniture
An overnight stay for 2 at The Dunkenhalgh

A variety of raffle prizes including an echo dot, a fire kids tablet, a hand crafted oak stool and other fab prizes!

We are still awaiting some donations coming in which we will share and if anyone would still like to kindly donate anything it would be very much appreciated ❤️

Tickets are £1 each and the raffle will be drawn mid December 🧡💚❤️

Please share thank you 🧡💚❤️

Sheryl Lawson Andrew Charlesworth

Accrington Stanley Supporters Trust - Annual December Raffle 2025! 🎟️

Accrington Stanley Supporters Trust are always keen to support our local community, so this year, for our December Raffle Draw, the following causes are being supported, with the split:

40% to Derian House
40% to Jeffreys Journey
20% to Accrington Stanley Supporters Trust

Tickets only £1 each.

There are many Prizes including -

- Accrington Stanley Hospitality Tickets
- Clayton Park Bakery Hamper
- Tiger Lounge Bottomless Brunch Voucher
- Variety of Gift Vouchers from local Restaurants, Bakerys, Salons, Tattooist

See https://onstanleyon.com/2025/09/22/annual-december-raffle-2025/ for full prize list.

Tickets will be available from Accrington Stanley Club Shop, OASST Arndale Shop, OASST Table in the Clayton End & Coleys on match days.

We would also ask if there are any local Businesses or fans who would like to sell a few books (10 tickets per book) if you can please comment below and these can be dropped off/collected.

(We have some great prizes already but if you would like to donate a prize, no matter how big or small, we would love to hear from you!)

Draw date will be announced in due course but will be in Mid-December.

13/09/2025

🧡 Brain Infusion #109 🧡

On Wednesday Jeffrey and I were at Manchester for our loves fortnightly treatment and a first it was just us on the ward. Slightly late due to traffic however as soon as we arrived we went and got Jeffrey weighed before settling in our usual room and all obs being done. We spoke about seizures which are still present but not our main concern which was what we thought was his dystonia. The increase in medication had done nothing and our loves movements were getting so out of control again and we were really concerned about him losing weight as he did last year. I had sent a video from the weekend which was to be looked at by the neurology team.

Jeffrey was accessed just before 12.30pm and after grabbing some lunch I got onto the bed with our love to have a nap. After he received the 10ml of Brineura he has a flush to make sure the medication goes through the line and he doesn’t miss any. I woke as the syringes were being changed and was told the dietician had been to see me and was gutted I was asleep as she was so happy. Our love weighed in at 24.2 kilos meaning he had put just under a kilo on in two weeks 🙌🏻💪🏻

All in all everything ran smoothly and we were told we’d get a call with a new plan regarding his dystonia. We received a call yesterday to say that the neurologists had reviewed the video I sent and also compared to previous videos. They think that Jeffreys movements are not his dystonia however it seems our love has started with Myclonus which is another movement disorder of Batten disease. Frustrated that we’ve been tweaking the wrong medication, however a plan is now in place for one of his seizure medications to be upped over the next three weeks to try and get on top of it. So sorry for our love that on top of everything else he is going through, yet another part of Batten Disease has reared its ugly head. Frustrated and heartbroken as a parent as our little trooper just doesn’t get a blinking break it really is one thing after another!

Now we have an idea what we are currently dealing with and hopefully the medication increase will help calm his movements as the only time he is still is when he is asleep due to sedation.
A few appointment before his next treatment day and fingers crossed his movements improve and our loves little body gets a bit of a rest 💙


Sheryl Lawson