My Kabuki Girl | A special needs journey

Our Special Needs Journey with Kabuki Syndrome

None of us chose this life with Kabuki syndrome.

But here it is and, together, we are going to make the best out of it.

The ferocity of traumas

For R U Ok Day I reflect on my miscarriage and how traumas affect us at the core of our soul.

My Missed Miscarriage at 12 weeks

[written on Monday 19 August] Seven days ago I had a missed miscarriage. A bit of background: we have a 21 months old girl with Kabuki...

The gift of sadness

Sadness is a weird feeling. Out of all the emotions that one can experience, sadness is the least appealing and popular.

A curse and a blessing

They immediately recognise a person who lives with Down syndrome, but Kabuki is different. It feels equally like a curse and a blessing.

25 April, for us

What does the 25th of April mean to you? This is how we live it as an Italian-Australian family.

No means no

This week (well, this month in general) has been particularly hard for our baby: hospital visits, therapies, and the late evening rush to...

Of blood and milk and tears

The first hours of becoming the mum of a cardiac baby, after a long labour and caesarean, were made even worse by inappropriate nurses.

I complained to the hospital: this is what happened

I decided to complain to the children’s hospital after our last hospital admission. Back story: our daughter Beatrice has Kabuki...