How long is a piece of string? 🤷🏼‍♀️🧵 Apparently, that’s the consultant-approved answer when it comes to Maya’s recovery… But sorry, I’m not accepting that energy 🙅🏼‍♀️ Maya WILL walk again. I don’t know how. I don’t know when. But I know she will 💪✨ And last week? It felt like a tiny slice of “normal”life again… and honestly, it felt really good to be back 🥹 I got to do the job I actually love doing again 💻❤️ Saturday morning, I went on a proper morning walk with Ter

🩷 An Update on Maya 💜 Over the past few weeks, I’ve shared snippets here and there. But I wanted to sit down and give you a proper update on Maya — because when you’re living it day by day, it’s hard to see the full picture. The Timeline 26th January – EMG (Electromyography) Needles into muscles. Wires measuring what Maya’s body can no longer do. 27th January – MRI head and whole spine under GA Watching Maya on her bed wheeled away, again, for another general anaesthetic —

Facing Another Hurdle: MiBG Scan Ahead (under GA- General Anaesthetic) This Wednesday, 11th February, Maya will have her MIBG scan under general anaesthetic. The day before, Tuesday 10th February, she’ll have the contrast injection. Most of Maya’s medications are now given orally—Prednisolone tablet 4mg BD, Aciclovir, Amiloride 5mg, Melatonin (liquid)—and the nastier-tasting ones, Itraconazole and Potassium, go through her NG tube. Aside from her monthly IV Pentamidine, she

The Questions We’re Still Living With Yesterday, 26th January 2026, Maya underwent an EMG (electromyography) — a test to assess how well her nerves and muscles are communicating. The questions we are desperately hoping to get answers to are ones no parent should ever have to ask: Why are Maya’s lower limbs still not responding? Have her nerves been permanently damaged by the severe immune reactions following CAR-T cell therapy? These questions sit heavy with us — because they

Kind-hearted people have taken the time to suggest that Maya may be eligible for hospital transport — and we truly appreciate it. Patient Transport is a service provided by G4S on behalf of the NHS Integrated Care Board for Kent and Medway. It is designed to support you if your medical or physical condition means you cannot use public transport, get a lift, or drive yourself to, and from, your NHS appointment. people who are unlikely to qualify for this service are usually th