Tag: syndromes without a name

• Palliative Care for a Child

  

  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.

  Abigail Burton

  23rd Sep 2019

  Recommended Resources

  complex medical condition, grief, medically fragile child, paediatric palliative care, palliative care, special needs child, special needs mums, special needs parent, 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…

  Abigail Burton

  5th Sep 2019

  Our Story

  complex medical condition, grief, medically fragile child, palliative care, special needs mums, special needs parent, syndromes without a name

• 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…

  Abigail Burton

  3rd Sep 2019

  Our Story

  complex medical condition, medically fragile child, rare condition, syndromes without a name

• 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.

  Abigail Burton

  3rd May 2019

  Recommended Resources

  carer, complex medical condition, palliative care, rare condition, syndromes without a name