Marley’s Moves

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

31/03/2026

Marley’s first charity do💜 all proceeds are spilt 50/50 to Rosehill Youth Theatre and to Marley to help her with any equipment she will need in the future and to help towards costs for potential gene therapy which is set to have its first human trail next year in 2027, we are staying hopeful that she will be accepted🤞🏽
Please share this post, we appreciate all the support💚

We are proud to announce this years Fil Rourkes Rock24/7

This amazing line-up of Local Talent for local charities

26/03/2026

Today is Epilepsy Awareness Day💜
So here’s a cute photo of our messy fighter! Even on her worst days she’s always smiling. The strongest person I know! We’re so lucky to be your parents💜

11/03/2026

What is CDKL5?
A question a lot of people have asked us over the last 10 months that I feel would be beneficial to answer for those following this page.

So CDKL5 is a rare, genetic neurological condition caused by a mutation in the CDKL5 gene of the X chromosome. Due to it being an X chromosome mutation it more often affects females than it does males however there are males affected by this condition. It is rare and only estimated to be diagnosed in 1 in 40,000 to 60,000 people. The CDKL5 gene is crucial for brain development and without it or when someone has a mutation of this gene, the person suffering from this condition are likely to have early onset seizures usually starting within the first 3 months of a child’s life that are extremely difficult to control, they will also experience severe developmental and cognitive delays (often unable to walk or speak), motor impairments, vision issues, some physical features such as low muscle tone, breathing irregularities, scoliosis and in some cases gastrointestinal issues and even more health complaints.

The cause/ the reason for the mutation to happen? A question that is still yet to be fully determined as every case and backstory is entirely different with no distinguishing patterns, physically or biologically… For Marley’s specific case she has CDKL5 mutation “de novo”. De Novo stands for a genetic mutation that appears for the first time in a family member, therefore there is no genetic history on either of our family’s sides that would have caused this condition to happen. So for us, Marley’s condition was caused by a spontaneous occurrence due to a random error during her biological process which occurs in the first few days after conception, so there is no way to avoid this from happening and unless you have a family member with CDKL5, there is no routine test to spot this during pregnancy. The only way to know if your child has CDKL5 is after they’re born when they start to show symptoms which then would need diagnosed through a genetic testing such as the R14 genetics.

There is very little treatment options available for this condition and for Marley at this present minute but we do all we can with the tools we have to fight this condition every day to allow Marley to have the best life that she can and I will share more about the Marley’s day to day life soon.

Finally a massive thank you to everyone who has followed this page and interacted with the posts so far! We are really blown away and thankful with the engagement we have seen through this page, it warms our hearts to see so many of our friends and family actively following along for Marley’s journey! We appreciate you all❤️

CDKL5 Gene Therapy CDKL5 UK International Foundation for CDKL5 Research-IFCR

09/03/2026

Welcome and thank you for following Marley’s CDKL5 awareness page. This page is designed to spread awareness for people who like Marley are living with CDKL5 and the daily struggles, challenges and successes the condition brings to their lives.

Introducing Marley and some information on her life so far. Marley is just over 10 month old. Unfortunately, when she was 3 weeks old, we now know she had her first seizure, this was on Friday, the 23rd of May 2025. After some time of staying in Newcastle RVI Hospital Marley had multiple tests done to confirm weather or not she was having seziures and to try a work out why? A few weeks after being discharged when Marley was 8 weeks old we had the phone call to say that the R14 genetics testing had came back with a positive result, I initially was happy as to me a positive result meant a way to fix and a way to stop our baby from having seizures all the time, this was not quite the case. Marley has a rare neurological condition called CDKL5 deficiency disorder which currently has no cure, is life-threatening, the seizures are very hard to control as they are anti-seizure and anti-epileptic medicine resistant, there is currently no gene therapy made to fix the issue and the condition comes with a lot of health complaints, e.g. she is highly likely to not be able to walk or talk, she will have neurological issues, developmental delays, a lifetime of seizures and she may have visual disturbances and could end up being blind, lots of people with this condition also have gastrointestinal issues that require a feeding tube along with lots more issues… the list of issues feels endless. Gene therapy would be the only cure in the future and at the time of being diagnosed it was looking as though it wouldn’t be available worldwide for another 15 years. She has had multiple seizures a day every day since she was 3 weeks old up until the 19th January 2026 where she started a new anti-epileptic drug, Clobazam along side her sodium valproate and levetiracetam, since then she has now only had 4 seizures in the last 7 weeks which is amazing compared to 3-6 a day every day. We feel extremely thankful and lucky for every seizure free day she gets as we know they are not guaranteed. We have so much more to share about Marley’s life but I thought a semi brief introduction would be a great place to start. For right now we are enjoying seeing our baby girl finally start to hit some developmental milestones and we are staying hopeful for better days ahead and more success to share❤️

CDKL5 UK CDKL5 in Color CDKL5 Gene Therapy