Ava-Lily was born with half a heart and had open-heart surgery when she was just three months old. She was also born with several vertebrae missing from her spine and needs a frame to help her walk.

Ava-Lily refuses to let her condition hold her back – and her parents try desperately not to wrap her in cotton wool and are determined to make the most of every moment they have as a family, for however long that may be.

Mum Kirsty and dad, Andrew, also have a son, Logan, who was born with four different defects within the heart, but following major surgery is now a healthy little boy. They had another son too, Rhys, who had the same condition as Ava-Lily and was stillborn at 18 weeks into pregnancy.

How Demelza supports Ava-Lily

Ava-Lily's mum, Kirsty shares: “Family life can be stressful. We worry about every sneeze or cough as Ava-Lily is very susceptible to infection. We struggle to do things as a family but Demelza really helps us with that.

“Ava-Lily loves the hydrotherapy pool. A public pool would be far too cold for her. We have stayed overnight, with Ava-Lily being cared for downstairs in the hospice and we were upstairs in a family room. It meant we could get a good night’s sleep and spend some time with Logan, who often misses out because of all the attention we have to give Ava-Lily.

“We also love the Christmas parties and all of the fun activities that Demelza puts on. It’s also nice to meet other families who are going through similar things and to know that we are not alone.”

Help us support more families like Ava-Lily's

As a charity, Demelza is almost entirely dependent on people like you to provide the funds that keep our services going. 

Please ensure every child and family can depend on us when they need us most. 


Oakley's story

“In a moment your whole world can be turned upside down. This is what happened when our two-year-old son Oakley was diagnosed with Angelman syndrome; a complex genetic disorder that primarily affects the nervous system. Demelza coming into our lives was like a big hug for our family." - Lisa, mum to Oakley

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Oakley sits on his dad's lap, whilst playing with a guitar toy.

Darcey's story

"Darcey’s smile and her character help us stay strong – as does the support from our friends and family. But, due to Darcey’s complex medical needs, there is so much they cannot help with. That’s why the support we’ve been receiving from Demelza has been vital." - Zoe, Darcey's mum.

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Darcey sits on mum, Zoe's lap, with her hand resting on her chest.