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
