“The parents can understand their grief by what they are writing and drawing,” Darren said. “A lot of children don’t speak out — but they’ll put it on pen and paper.”

They’ve handed out the bags to more than 15 hospitals and raised over $24,000. Darren and his friends even climbed Ben Nevis in Lila’s memory.

But what they really want — beyond change, beyond awareness — is their little girl back.

“You’re just sort of surviving, really,” Rachael said. “There’s all the ‘what-ifs’. What if we had taken her to another hospital? There’s all sorts.”

Lila Marsland should be remembered for her love of life, not for what was taken from her. She should still be here, playing with her sister, riding her bike, and lighting up every room she walked into.

Instead, her name has become a rallying cry — not because she was famous, but because she should never have had to be.