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
Tag: 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.
...So we began to get creative. Going broke or bankrupt wasn't part of our plan.
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.