Ruby's story


"Before we stayed recently, I calculated all the things I didn’t have to do in the four days we were staying at Martin House. It’s knowing that I can turn my head off from being a nurse. It feels like a dream.”


11-year-old Ruby has William’s Syndrome, complications with her heart and intestinal failure, which makes her condition life-limiting. Ruby is consequently on a 24-hour TPN infusion, and in 2018, Ruby was rushed to have emergency open heart surgery after doctors found an aneurysm in her main artery. 

Danielle, Ruby’s mum, first found out about Martin House when the family spent eight months in hospital following the surgery.

“We kept noticing staff from Martin House were coming in to visit other children on the same ward. Ruby is very sociable and got chatting to them, and from then we found out Ruby could be referred.

“The first time we visited was just to look around and familiarise ourselves with Martin House. I imagined dark rooms but I was so pleasantly surprised.

“Ruby often has a persistent cough, but with the current situation, I began to panic a few weeks ago as, if she gets a fever, we have to go into hospital as we have to treat it as if it could be sepsis.

“With everything going on and realising that getting through to a GP or the hospital could be difficult, I knew I could ring Martin House who completely reassured me when I explained what was happening. The doctors at Martin House know Ruby and know her conditions. It always amazes me when they remember everything about her.

“At this time, I know I couldn’t live without them. Some days, you feel desperate. We’re isolating because of Ruby so she has to stay in for twelve weeks without being able to go out, even for a walk. Ruby loves to socialise, and that’s also her independence. She looks forward to seeing people, so it’s difficult at the moment. It’s horrible to see as a mum as she just wants someone to fix her.

“Some days, I struggle to deal with it all. We can’t change anything, but Ruby sometimes asks me why we can’t change things. We take each day as it comes. Before we stayed recently, I calculated all the things I didn’t have to do in the four days we were staying at Martin House. It’s knowing that I can turn my head off from being a nurse. It feels like a dream.”