For four-year- old Chiara and her parents Natalie and Mauro the past four years have been a long and winding road, filled with medical appointments, new therapies and heart-warming milestones.
Chiara journey begins
Chiara’s story starts before her birth, at Natalie’s 20-week prenatal ultrasound when a sonographer had difficulty locating her right foot. Further tests confirmed she had congenital talipes, commonly known as clubfoot and would require treatment to correct the condition from an early age.
Chiara’s mum Natalie began to chronicle their experience on her honest blog Chiara’s Journey, sharing her fears, frustrations and hopes for daughter’s future, including her growing concern that something else was wrong.
With more than 50 visits to The Royal Children’s Hospital and countless tests, including an MRI, Chiara was diagnosed with Polymicrogyria just four-months- old.
What does this mean for Chiara?
Polymicrogyria is a rare neurological condition that affects the development of the brain, creating lots of little folds in the brain tissue called gyri.
Polymicrogyria can affect any part of the brain or the whole brain. Chiara has one of the rarest forms, Bilateral Perisylvian Polymicrogyria, affecting the outer surface of the brain, known as the cerebral cortex.
Further to this, Chiara also has Microcephaly, meaning her head is significantly smaller than the heads of other children, and Spastic Quadraplegic Cerebral Palsy.
Chiara's conditions cause her to stiffen up and arch her back extensively. She isn’t able to be placed in a reclining position, she can’t bear lying in a pram or sitting in a car seat. Making it difficult to do simple tasks other people take for granted, such as going to shops or walking to the park.
Unfortunately, there is no known cure for Chiara’s conditions and treatment is based on the child’s symptoms, generally this includes early intervention with physical, speech and occupational therapy.
Therapy, funding, equipment and yoga
Natalie, Mauro and their extended family have thrown themselves into Chiara’s treatment, combining conventional treatments with yoga, diet, swimming and spirituality - luckily Natalie is a yoga teacher, and both she and Mauro have a background in naturopathy.
The dedicated family have even travelled to the United States to seek specialist treatment, and are seeing good results.
It’s a full-time job; and with Chiara’s older sister Grace to think of, the duo has left work to focus on their family.
While the budget’s tight, the strain has been eased by funding from organisations such as The Children’s First Foundation, SWEP and NDIS.
Our business has also been involved in Chiara’s journey, providing a specialist seating system, the Bingo Stroller, to position Chiara comfortably when she’s out and about with her family.
Progress is slow but each milestone big and small is celebrated by the family and their community, and their work is paying off, with Chiara now sitting unsupported.
Natalie’s exceptional ability to see the light in even the darkest situations and rejoice in the little things makes her writing informative, moving and often uplifting.