Being referred to palliative care for a child can be terrifying, but actually their roll is to help their patients & families get the most out of life.
Tag: syndromes without a name
Dealing with Death – after you have lost a Child
I never considered before what dealing with death after I lost Matthew would be like. It's Father's day.Today I am mourning another little person gone too soon. I absolutely 100% knew dealing with death of children close to me would happen. But I didn't know how it was going to affect me. Another blow Yesterday … Continue reading Dealing with Death – after you have lost a Child
Caring for a Child with a Rare Condition
We didn't know we were living with a child with a rare condition. Where we started; Our first peek into the world that is fragile & complex medical conditions, was when Matthew was just 9 weeks old. We had been at our parent's for dinner. I gave him a bottle/feed before we put him in … Continue reading Caring for a Child with a Rare Condition
SWAN – Australia
The first time I attended a Syndromes Without A Name – Australia event, I’ll admit I wasn’t sure it was the place for a family like ours, living with a severely disabled child with a life limiting condition.
Caring for yourself as a Carer 