Marley’s Moves

04/10/2026

September🤘🏽

For anyone who didn’t know, Marley had her first-ever charity event, Rock 24/7, at The Solway Hall. On the very same day, we were even luckier to have a second fundraiser put on by Marjorie at The Green Hut, Harrington.

We are so grateful to announce that, altogether, we have raised an incredible £4,851! We are lost for words and overwhelmed by how generous everyone has been. We owe a massive thank you to Sara Rourke, Brad Messenger, Marjorie, the staff at The Solway Hall, all the bands that played and to everyone who bought a ticket or donated raffle prizes for either event.

Because of this amazing support, we have happily been able to purchase Marley’s first wheelchair the Hoggi Bingo Switch Cross which will enable her to keep doing the things she loves, like going for walks to see the trees and splashing in the lakes. We have also been able to get a Firefly Size 1 GoTo Seat so she can sit comfortably in shopping trolleys, swings, and restaurants. We thank you all from the bottom of our hearts 💜

This month, as amazing as it has been to see everyone pull together it has also been one of the hardest. We were successfully weaning Marley off Vigabatrin, managing to get all the way from 7.5ml down to 1ml. Unfortunately, on the final drop from 2ml to 1ml, her infantile spasms came back along with many more nasty seizures. Even after increasing the Vigabatrin back up to 2ml, raising her Clobazam from 4ml to 5ml, and starting her 5th anti-seizure medication (Lamotrigine), her seizures have become more aggressive. She is now having up to 4 a day, each lasting around 4 to 5 minutes and has started having clusters where she has 2 within an hour.

It is a scary time at the moment but we are working hard with her medical team to get a handle on this so Marley can have a better quality of life again. She is such a lucky girl to have so many people come together to fight for her to have a comfortable, happy life. We thank you all again. Hopefully, next month we’ll have better news; for now, we will trust the medical guidance in place and continue to believe that tomorrow will be a better day.

With love always,
Marley and Family 💚



Therapy Goals 4 Kids CDKL5 UK CDKL5 in Color International Foundation for CDKL5 Research-IFCR CDKL5 Gene Therapy

06/08/2026

July 🌸
A slightly later post than usual—life has been so hectic! But we are finally back with an update, and an amazing one at that.

In our last post, I explained that Marley’s seizures were getting progressively worse. We found the potential culprit, and so far, our theory is proving correct: Vigabatrin.

Marley was prescribed this for her infantile spasms, but unfortunately, she was having an adverse reaction to it. As her parents, we had our suspicions from the first few weeks, and close family members quickly agreed. I raised our concerns with the RVI on multiple occasions during the 6–8 weeks the adverse reactions were happening, explaining that I believed the medication was making her poorly. I was told nothing could be changed until our face-to-face appointment on 3rd August. But, as any parent would do, I didn’t take no for an answer.

We watched Marley become more and more sedated. She was projectile vomiting multiple times a week, her seizures went from two a day up to five a day, and towards the end, they were lasting anywhere up to 8 minutes and 45 seconds, during which she would stop breathing. She had a persistent cough the entire time she was on this medication. I visited the hospital and doctors many times during this period, only to be told her swollen and extremely irritated throat was "just a viral."

Something didn't feel right. I kept emailing and calling our neurologist in Newcastle, and eventually—after six weeks—she agreed to a proper phone call. She finally conceded that Marley was indeed having an adverse reaction and that it was highly possible she is Vigabatrin-intolerant.

Hearing that we were right and that this wasn't all in my head gave me a massive sigh of relief, mixed with an immense feeling of fear. We now had to wean her off the medication that had stopped her infantile spasms, and that prospect was just as scary.

On the 1st July, we started weaning by 1ml a week while increasing her sodium valproate. We are now on week 5 of the wean, and I can wholeheartedly say it is the best decision we've made so far! She no longer has an irritated throat or cough. She hasn't been sick in weeks. Her seizures have drastically decreased to just 1–3 a week. We have finally stopped seeing one of her many types of seizures: myoclonic head drops! Most importantly of all, we finally have our Marley back.

She is awake a lot more and we're finally seeing some new mini-milestones. She is attempting to play with toys, giving us more eye contact, and her overall body strength is improving in physio. She is vocalising and babbling again—something we haven't heard in weeks 🥺. She’s also gained one major milestone of holding her own milk bottle to drink!

Our happy, healthy-ish girl is back, with far fewer days of uncontrollable pain and so many more smiles. It is amazing to feel like we’re finally on the right path.

Another major milestone this month: Marley had her first NHS wheelchair assessment. It was hard to digest at first—being told she needs full-body, highest-level support. However, it was also wonderful to see how comfortable she is in a wheelchair. Our main goal will always be for Marley to be comfortable and happy!

I'm personally not happy with the standard NHS wheelchair option, as you can feel every pebble and crack in the road when in use. Because of this, we’ve scheduled an appointment to try out a private brand this month in the hopes of finding something more suitable for Marley's needs and our family's lifestyle. We are very excited and hopeful to see what's to come.

We’re leaving July feeling so grateful for every new, happy day with Marley, and so excited for the future 💜

CDKL5 UK CDKL5 in Color CDKL5 Gene Therapy Therapy Goals 4 Kids

30/06/2026

June☀️

What a month it has been! I won’t lie and say it’s been a breeze—it’s been far from it.

June has brought many serious conversations and a lot of advocating for what Marley needs. While it is disappointing that we aren’t much further along than we were in May, I know that every hard debate brings Marley one step closer to where she needs to be.

In some wonderful news, this month we had Marley’s first phone appointment with Professor Sam Amin and his team at the CDKL5 Centre of Excellence in Bristol. We have fought for this access since Marley was just 8 weeks old. On 8th June 2026, Professor Amin provided us with a clinical plan for Marley’s medication and surgery pathway for the next 12 months. He has accepted Marley for future treatment with Fenfluramine—an opportunity currently available to only 10 children in the UK—and we feel incredibly honoured and grateful, as this could be life-changing for her. He has also backed our request for an earlier VNS implant. The approval and fitting process can take up to 12 months, but having the support of someone as qualified as Professor Amin gives us so much hope. We are keeping everything crossed that her local neurologist will agree to initiate the referral at our face-to-face appointment on 3rd August. 🤞

Since Marley developed infantile spasms on 7th May, her seizures have progressed violently. While we can successfully say the spasms are currently at bay, she is still averaging 2–3 myoclonic, hypermotor, and focal seizures a day—sometimes experiencing all three types at once. Recently, after catching a viral infection, we experienced the first seizure where Marley had difficulty breathing and, for moments, lost the ability to breathe. It was heartbreaking and terrifying to watch. She has now 99% recovered, and we are praying this was an isolated incident due to the illness.

Finally, on a positive note, we’ve had our first appointment with our housing association to discuss potential plans for extending our property to better suit Marley’s ever-growing needs. It is a big request, but we are staying hopeful.

As much as people tell you not to wish your life away, I am counting down the days until 3rd August. We are eager for her face-to-face appointment so we can hopefully start her medication wean, get her stable for Fenfluramine, and finally get that VNS referral submitted. 🥺

We will keep fighting for you, Marley. 💜

CDKL5 UK International Foundation for CDKL5 Research-IFCR CDKL5 Gene Therapy CDKL5 in Color CDKL5 Parents Support Group

26/06/2026

26th June 2025… a year ago today. Marley was eight weeks old. I remember this day like it was yesterday. I was driving to pick Marley up from my parents house—the first time I’d left her for a few hours since she was born— I was on my own when I took a phone call from Newcastle Hospital. It was Dr. Albert Lim.

He told me the R14 genetics test had come back positive. At the time, I was actually relieved, which might sound crazy now, but my initial thought was, “Thank God, what is it? How do we fix this?”

The words I was met with shook my soul in a way I don’t think I have ever fully recovered from. He said, “Your child has an extremely rare genetic condition called CDKL5. Unfortunately, this condition is drug-resistant to all medication we currently have available, so it’s unlikely Marley will fully respond to medication, however, we will keep trying until we find something that helps. This condition also has no cure or gene therapy available at the minute, and we’re estimating another 10–15 years before one is more regularly available, but I can tell you that there is one in development, which is positive to know for the future. I do need to make you aware that this condition is known to cause severe disabilities; she’s unlikely to walk or talk, and her mobility will likely be very impaired. She could have vision, respiratory, and gastrointestinal issues, but we will help Marley and you all, as a family, to the best of our ability along this journey. I know this isn’t the news you wanted, and I’m so sorry that I’ve had to give you this news, but as I was the one who pushed to have the R14 testing done, I felt it was best that I was the one to give you the results...”

When you see in movies everything going in slow motion and your hearing becomes very faint, as if the whole world stops in its tracks… I never believed that was real until that moment. I hung up the phone and just sat there in silence. Then, I suddenly realized I had to tell Marley’s father, Neirin, and our family and friends. I was terrified to break their hearts, but some conversations just have to be had, and this was one of them. I drove to my parents house; I thought I could be strong and just say it, but before I knew it, I was in a ball on the sofa, crying into my stepdad arms, probably making no sense at all.

26th June 2025 was the hardest day of my life by far. The people who know me, know I haven’t had the easiest run, but I’d take any of those awful days over and over and over again to go back in time to a day where CDKL5 didn’t exist to us.

A year on, I am so thankful she was diagnosed as young as she was. Even though there is a lack of medications to help her, at least we are part of the CDKL5 community now, which has such ever-growing knowledge to help guide us in the right direction.

Thank you to every single person who helps us on a daily, weekly, or monthly basis in any way, shape, or form. We are so lucky to have such amazing people around us to help fight this awful disorder.

We will keep fighting for you, Marley, until one day we have a cure. 💜


CDKL5 UK CDKL5 in Color CDKL5 Gene Therapy International Foundation for CDKL5 Research-IFCR CDKL5 Parents Support Group

04/06/2026

My first ever charity do🤘🏽 please come and join us with some amazing rock bands at The Solway Hall Whitehaven
Ticket link below❤️
https://www.ticketsource.com/thesolwayhallwhitehaven/t-kddpelv

Join us Saturday 19th Sept at The Solway Hall, Whitehaven for an unforgettable day of live music featuring Jailbird Junkies, Thy Demise, Damaged Goods, Knuckle Duster, and more. Tickets £20/£10 with under 16s welcome. All proceeds support Rosehill Youth Theatre and Marley’s Move CDKL5 charity. Don't miss out!

https://www.ticketsource.com/thesolwayhallwhitehaven/t-kddpelv

12/05/2026

Infantile Spasms…
Unfortunately on Thursday afternoon Marley experienced her first full Infantile Spasms and over the weekend has continued to have many more! We fought with hospitals all weekend for Marley to be seen or at least for her videos to be seen by a neurologist but to no luck as over the weekend in the UK the epilepsy specialist team are on very limited hours and most neurologist are off so to find a neurologist to see Marley and her videos was virtually impossible. We were reassured Saturday morning that from what we were describing over the phone, Marley’s seizures where just her “normal seizures advancing” but something didn’t sit right in our guts. We know our daughter and we knew that if these seizures did end up being infantile than time wasn’t a luxury we had…
In the end, Sunday morning we decided to not take no for an answer and to trust our guts and drive just over 2hrs to our closest Neurology Hospital A&E to push for someone to at least see Marley’s videos and assess her. Thank god we did! As soon as the on call neurologist seen her videos we were all in full agreement that these seizures were in-fact Infantile Spasms! We were right for trusting our guts and by getting her seen and treated quickly Marley hasn’t currently developed any brain damage from these spasms! She is now medicated and we are staying hopeful that this medication stops the spasms permanently in its track!

This post is to make awareness of Infantile Spasms and the affect they have on our children if untreated.
• Approximately 81-82% of children with CDKL5 will develop Infantile Spasms before the age of 2 years old.
• Some children (around 43%) with CDKL5 experience a break in seizures for a few months before these spasms evolve.
• Only around 34% of CDKL5 patients actually show Hypsarrhythmia on an EEG which is the brainwave pattern needed to diagnose Infantile Spasms, this can make the diagnosis trickier and can delay vital treatment. Don’t let a clear EEG prevent treatment. Milestone regression and clear video evidence is enough to be treated to prevent this condition from progressing and from causing any brain damage.

If you suspect your child is having Infantile Spasms. Video, go to A&E or see a neurologist immediately, request an EEG, start treatment to minimise development delays.

CDKL5 UK CDKL5 Gene Therapy CDKL5 in Color

06/05/2026

Friday 1st May was Marley’s 1st Birthday🍓❤️
We spent the Friday morning at the aquarium as she loves seeing the fishes and Saturday we had a small family party at Billy Bears🐻
We’re so grateful and lucky for the family we have around us❤️
CDKL5 UK CDKL5 Gene Therapy

29/04/2026

April update🌼
We’ve had a family trip to Blackpool this month to go to Sea World and Gruffalo and of course lots and lots of physio, at home and at Therapy Goals 4 Kids💚
April has been an amazing month jam packed with wonderful memories but it has unfortunately came with the return of seizures multiple times a day pretty much everyday... we’re doing everything we can to get a handle on them but currently we’re just taking the good hours when we’ve got them and allowing rest when needed!
Keep on smiling Marley as you always do💜
CDKL5 UK CDKL5 Gene Therapy CDKL5 in Color