Tag: rare condition

• 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

• Hospital Cooking

  

  …So we began to get creative. Going broke or bankrupt wasn’t part of our plan.

  Abigail Burton

  24th Apr 2019

  Tips for making it better

  complex medical condition, finances, grief, hospital, palliative care, rare condition

• Flexible Freedom

  

  She has travelled the world and the country to get Noah cutting edge treatments, and all the while working on herself, finding a way to balance her own self-care and empowering people to live their best life.

  Abigail Burton

  16th Apr 2019

  Recommended Resources

  carer, complex medical condition, flexible freedom, grief, palliative care, rare condition