VALENTINAS STORY - Valentina's Village

Valentina’s Story

This is Valentina.

She’s two years old. She’s happy, she’s full of life, she’s smart, she’s cheeky, and she’s our first and only born.

She’s also the only person in Australia living with her condition.

From day one, we knew

From day one with Valentina, we knew something wasn’t right. Things didn’t add up.

She was screaming all the time. Not a newborn scream. A scream from pain, and nobody could tell us why. She wasn’t moving her arms the way a newborn should.

That’s when we really knew.

So we went from doctor to doctor, test to test, searching for an answer.

When the answer came, it broke us

Hyaline Fibromatosis Syndrome.

We thought Valentina had something purely physical. This condition is so much more. It’s all-encompassing. It attacks every system and every part of her body.

It’s a genetic condition so rare that Valentina is the only person ever reported in Australia to have it.

And then came the words no parent should ever hear.

There is no cure. All we can do is manage it.

There is no cure.
All we can do is manage it.

It was said as though it was something we just had to accept.

We can't accept that.
And we won't

Donate

What Life Actually Looks Like

People always ask us what life looks like.

Up to ten appointments a week. Constant therapy. Multiple medications. Multiple surgeries. Constant advocacy for Valentina. Constant worry.

Every day is the unknown. We don’t know what she’ll wake up with, whether there’s a new symptom, what’s developed, or what might come next.

And we’re racing the clock. Valentina has already started to develop further symptoms.

read about HFS

We Live With a Smile

We live every day as it comes. We live with a smile, and we’ve tried to take this in our stride. We want our family, our friends and our village to know that we’re okay.

But the reality we’re living in right now is one we just can’t accept.

Sara & Domenico Ruggeri

Valentina’s Parents

So We’re Doing Something About it

The science exists. The team exists. What we need now is the funding to get Valentina there.

We’re not asking you to feel sorry for us.
We’re asking you to stand with us.

Valentina deserves the chance to grow up, to go to school, to live the life every two-year-old should get to live.

And our world needs Valentina around.

Sara and Domenico Ruggeri
Valentina’s Parents

Join Valentina’s Village

Donate

READ OUR PLAN

Valentina’s Story Our Mission Gala Dinner

Life in the village

Valentina's Village Ltd is a registered charity with the Australian Charities and Not-for-profits Commission (ACNC).
ABN 95 700 589 064

Tax status: Valentina’s Village Ltd has applied for Deductible Gift Recipient (DGR) status. Donations are not currently tax deductible. If DGR is granted we will contact everyone who has given about receipts.