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

I left ICU on Thursday night, close to 11pm, after a long, reassuring chat with Maya’s night nurse. I tried to find comfort in knowing she would be watching over my baby girl — and she really did. Friday morning was the first time in a very long time that I slept without interruption… even if it was only about four hours. I spent the rest of the morning doing admin on my phone — cancelling and postponing all of Maya’s outpatient appointments: SALT, physiotherapy, her annual E