Let’s get together to beat
Rett Syndrome


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Mia’s Story

Our precious beautiful daughter Mia’s life started out like most little girls. When she was born she developed typically but without our knowledge of Rett Syndrome, as it was yet to show us the signs. Slowly she lost the ability to pick up her food, communicate her needs and was struggling to meet her milestones. At first we thought she had a developmental delay and she just needed more time. But at 18 months old little did we know that a precautionary genetic test to rule out Rett Syndrome and other genetic conditions would result in turning ours and Mia’s world upside down. Unlike her peers, Mia isn’t walking, she isn’t able to have conversations and she cannot purposefully use her hands, as she has Rett Syndrome.

Mia is now nearly 3 years old. She is the most happy and bubbly little girl, whose smile lights up the room. Like most kids her age, Mia loves music and “dancing”, playing dress ups, having tea parties, going to the park and most of all her baby brother Gianni. However, Rett Syndrome has robbed Mia of her ability to explore and fully interact with the world around her. She is limited in her body, with sound intellect, but struggles to communicate.

Now, rather than running around kinder and playing with her brother, Mia’s weeks consist of multiple appointments including physiotherapy, occupational therapy, speech therapy and music therapy. Mia constantly pushes herself to her full potential each day, undertaking two hours of physical exercises in addition to therapies to improve her hand function as well as practicing eye gaze tasks to help her communicate.

Mia is a strong, determined little fighter who never gives up and has the soul of a lion!

Although Mia is unable to communicate her thoughts and feelings easily, she makes it very clear that she does not like the restrictions Rett Syndrome has placed on her. She makes it very clear that she wants to push past the barriers of Rett Syndrome and be just like every other little girl her age.

Mia’s determination is our motivation for this fundraising event. We will fight just as hard as she has to fight everyday, alongside her to give Mia the only gift she really wants; to be free from Rett Syndrome! Our wish for Mia is a childhood full of memories, singing along to the Wiggles and Ed Sheeran, chasing her brother around the house and endless conversations about why the sky is blue.

With your support, we can help make this miracle possible for Mia.


Thank you from the bottom of our hearts.
Adrian and Chantal Mancini

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