Hi my name is La Toya,

I am the mum to an incredible little lady called Luna & she has Kleefstra Syndrome.

Kleefstra Syndrome is a rare genetic condition affected by the EHMT1 gene on chromosome 9.

There is only 30 people in Australia who have been diagnosed with Kleefstra syndrome & only about 1,000 in the world. Making these incredible humans extremely rare, so rare funding for research or support for families is non existent.

So as the community we must ban together to help raise funds to give our kids a better future.

The 17th of September is Kleefstra Syndrome Awareness day & we are embarking on an incredible journey to help raise awareness for our Kleefstra community!

Our goal is to raise funds to go towards the new Kleefstra Kids Foundation which is built to help families like ours to have better resources for education, research for a better future for our kids, a specialist team in Kleefstra Syndrome who is passionate about helping our warriors & to support families in their times of need.

We are going to be traveling over 4,000km along the east coast of Queensland to raise awareness for Kleefstra Syndrome!

As a family of a medically complex little girl a trip like this is a huge deal in our world & such an incredible opportunity to meet other Kleefstra Families along the way.

During this road trip we will be attending the Kleefstra Syndrome Fundraising Event in Sydney where we will stand with other families who have walked the Kleefstra Shoes.

We will be stopping in Port Macquarie, Canberra & finishing up in Melbourne!

Make sure to follow our socials so you can come along with us on this journey!

TikTok, instagram & Facebook

@warriorprincessluna

@staibtribedesigns

We appreciate every single one of you!