Callie, who is now 4 years old, was born with hypoplastic left heart syndrome, where the left side of the heart is severely underdeveloped. In her first few years of life she needed multiple open heart surgeries, before receiving a heart transplant in 2018.

Callie and her family are supported by Shooting Star Children’s Hospices, and take advantage of the support and respite we offer, including creative therapy.

Callie’s mum Toni created a beautiful picture as part of art therapy, and kindly donated it to us, where it’s now on display in our Guildford hospice, Christopher’s. She’s kindly allowed us to share it, along with her description of the various elements within the picture:

The family: in the centre of my heart is my family, who I could not be without and live everyday trying to protect.

Clocks: Indicate waiting and time – Our daughter has had five open heart surgeries and one heart transplant. As you can imagine there is a lot of clock watching that goes on! We also have to be vigilant about medication.

Centre of attention: Being in hospital means you are surrounded by people constantly, but the sense of loneliness can at times be overwhelming. It can also relate to family being around you but never truly understanding what you go through.

Heart trace: I saw my daughter go into a cardiac arrest – since then I have spent hours staring at the monitors looking at echos, stats and traces. It’s consuming.

Medication: My child will be on medication for the rest of her life to keep her alive – I am responsible for keeping her alive.

Suitcases: We never knew when our daughter would fall ill and need hospitalisation. We always have a bag packed.

Music: Because you have to have fun, no matter what.

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