India's Story

3 year old India has partial Edward's syndrome

3-year-old India has partial Edward’s syndrome, a rare chromosome disorder.

India was unable to breath properly since birth and after a stint in intensive care and numerous tests the doctors finally discovered India had a completely floppy larynx and needed a tracheostomy. Her mum, Suzy, said: “The implications of a tracheostomy were daunting, especially when we also had our other daughter, Freya, who was two at the time, to look after as well. But when India’s tracheostomy was fitted, it was amazing.

I think of that day like her birthday because she could start breathing properly, and could finally get some rest.”

Suzy and her husband, Ben, took India home and felt more positive – not knowing they’d be back at the hospital in just a few days. “We were home for less than a week and she suddenly deteriorated again. Her breathing got worse so we rushed back to the hospital and we just felt desperate at that point.” India spent another four months in intensive care.

It was at this time that Suzy called Shooting Star Chase. “We were utterly exhausted with everything that had happened and all the unknowns. I remember waking up every morning feeling sick, like realising a bad dream was true.” “One of the nurses met with us while we were in hospital and talked us through how Shooting Star Chase can help – and it couldn’t have come at a better time.

We use short breaks, Hospice at Home and Ben and I have also had counselling. “I love the staff – they’re dedicated, enthusiastic and positive – and they completely understand her needs and how I like India cared for. More than that though, I know she’s so loved when she stays there. She gets lots of cuddles and they’ll hold her if she’s upset. “Shooting Star Chase has been an absolute lifeline to us. They’ve enabled us to function as a family and supported me and Ben in a way that I can’t really describe in words.”

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