ICU Update – Sunday Evening 23/11/2025 Last night was another long, heavy night for our girl. After a stable Saturday, Maya suddenly slipped back into breath-holding and desaturations, dropping to 84% at times. She needed suction after suction; her chest sounded thick with secretions, and the team increased her Optiflow to 70L/min just to support her. But by 6pm tonight, she has fought her way down to 30L/min, now on air (21%), which feels like a small but hard-won victory. M

https://share.icloud.com/photos/056JOasGIGlmttZmzEJqFMl8Q 🩷 Maya Update – Monday, 10th November 💜 After one Sunday night of sleeping at home following my MRI yesterday (Sunday 9th Nov), I’m now back at Great Ormond Street Hospital (GOSH). Maya is very poorly, so I’m staying overnight with her again. My husband Terry isn’t coping well. He’s emotionally exhausted after a long, difficult Sunday night on his own with Maya. He’s currently staying overnight nearby at the Family A