Seven Weeks In. What It Takes To Move Maya

Friday 12th December started with one of those moments that really makes you stop and think about how much goes into caring for a high-dependency child.

Maya had an abdominal ultrasound booked for 9:30am. Getting her there is never simple. This isn’t just a quick trip down the corridor. Maya has to be transported on her bed, with oxygen running, monitors attached, emergency equipment and a defibrillator coming along “just in case”. A porter carefully pushing her bed, her nurse right by her side, with the IV machines (six of them!) attached to a metal double IV stand, every move planned because even the smallest transfer carries risk for a child like Maya.

So you can imagine how it felt when we arrived at Ultrasound and were told, “She’s not on our list — we weren’t expecting her.”

All that preparation. All that risk. All that stress on Maya — for nothing.

Thankfully, Maya’s nurse was having none of it. And the lovely (well experienced) receptionist knew the pallava of transporting a high risk child as nurse calmly but firmly explained that you don’t move a child like Maya around the hospital unless it’s absolutely necessary. Transporting her is not without risk, and it’s never done lightly. To their credit, the Ultrasound team managed to squeeze her in.

That moment — being heard, being flexible, and putting Maya first — is what true person-centred care should look like.

Later on, we were lucky to have a visit from family. Maya’s Auntie Ruth and Uncle Antony (Terry’s brother) came to see her, and honestly, those moments mean more than I can ever put into words.

Family love matters. Knowing you’re rooted for, prayed for, and surrounded by people who believe in you — it truly helps carry you through.

Maya then had another physiotherapy session, this time on the tilt table. Standing exercises to strengthen her neck, torso and core. It takes so much effort from her, but she keeps showing up and trying — even on the hard days.

At 2pm, it was time for a CT scan of her thorax. Once again, a porter was called, and once again we gathered all the equipment — oxygen bottles, monitors, defib, IV stand with IV machines and ECG— because with Maya, being prepared is everything. The scan itself was quick, but the logistics around keeping her safe are never simple.

Days like Friday are exhausting. Emotionally and physically. But they are also a reminder of why sharing Maya’s story matters, and why your support matters so much. Every penny donated truly helps keep us going. Maya has now been confined here at GOSH for 7 weeks, and I’ve been by her side for 6 of those weeks. Every share helps keep her story alive and reaching people who may be able to help.

Please keep sharing Maya’s journey far and wide. Please keep donating if you’re able — regular contributions truly make a difference. We feel every bit of love, and we are endlessly grateful for every

single one of you walking this road with us 🤍