Meet Ava

Ava works on counting in Year 2

“Our beautiful baby girl started with such challenges in life. Ava was born premature, had to overcome respiratory issues and at just three weeks of age, she contracted Whooping cough”, says mum Lina.

After overcoming these life-threatening challenges, at around six weeks of age, Ava was diagnosed with a heart condition and mucopolysaccharidosis type 1 (MPS). 1 Hurlers Syndrome. MPS 1 Hurlers Syndrome is a condition which affects many parts of the body due to a lack of Alpha-L-Iduronidase which is a Protein Coding gene enzyme. This condition, sadly can lead to a reduced life expectancy.  

By the age of one, Ava had undergone chemotherapy and a bone marrow transplant. Having also been diagnosed later with Autism Spectrum Disorder, her current condition means that her hearing, eye sight, her spine, hips and knees continue to be affected.  Ava continues to have major operations which she undergoes with bravery and a smiling face.

“Our little Ava is a blessing. She loves music and she loves to dance, something we encourage and appreciate every day” says mum Lina.

Finding a school that would care for Ava and cater for her health needs was very important for her family. Having a child with challenges like Ava’s, the focus becomes finding a place where she is accepted and has genuine friendships just as equally as having an educational program that excites and engages students. 

Ava loves attending school, she is very social and she enjoys spending time in class helping her teacher and classmates.  Her favourite activities continue to be Music and story time. The school supports Ava with an individualised program whereby communication is central to learning and success. Ava is thriving and all thanks to the support from staff, the developing programs and increased facilities made available through government funding and the generosity of community.

Sarah Stevens

Sarah Stevens is a former journalist, magazine editor and TV producer, and the director of Content Society. You can see more of her work here.

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https://contentsociety.com.au
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A Parent Perspective