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This condition is extremely rare. But Luca has made progress, and can now take wobbly steps of his own.

Luca can now take wobbly steps of his own.

By MICAELA GEORGE

On March 13th 2011 my best friend gave birth to a gorgeous little boy and named him Luca. He was the first son of Claire and Adam and a little brother to their daughter Scarlet.

Unfortunately, joy soon turned to despair when Luca became very ill, his liver failed and he developed a toxic level of jaundice, called Kernicterus. Kernicterus is extremely rare and occurs when the bilirubin crosses the blood / brain barrier. As a result of this, Luca was left with a type of deafness called Auditory Neuropathy, as well as Athetoid Cerebral Palsy.

The Athetoid cerebral palsy means that Luca cannot always control his movements, his muscles twitch and it can make it difficult for him to perform simple tasks. After almost three years of physiotherapy Luca has made great progress, and can now crawl and take some wobbly steps on his own. Luca also has a cochlear implant that he is still learning to use. He has a couple of words but finds it extremely frustrating not being able to communicate as he would like. People living with kernicterus are extremely intelligent, their mental comprehension is rarely affected, meaning that they can be a bright mind stuck inside a body unable to function satisfactorily.

The other most difficult thing to comprehend about this condition is that is shouldn’t happen there is a simple prick test to determine if babies have the condition but it’s rarely done and treatment is usually as simple as putting the baby under medical lights when caught early enough. Luca’s determination has seen him exceed the expectations of most specialists.

Even after two major setbacks last year – bacterial meningitis and unexplained liver failure resulting in an intensive care stay – Luca is fighting. But he still has a long road ahead, and he requires daily therapy sessions. Claire is also his full-time carer and she spends every day taking Luca to his numerous appointments and classes.

Luca faced some major setbacks last year.

Seeing how kernicterus has completely altered the lives of this amazing family I decided to create a special event – A Night For Luca, is taking place on March 21st to raise awareness about the condition and raise funds not only for Luca’s ongoing medical costs but also for two foundations that have greatly assisted Luca and the Bozikov family – Therapies for Kids and the Royal Institute for Deaf and Blind Children.

The evening will be lots of fun held at Wild Life Sydney Zoo with the entire zoo open just for the event – that includes keepers walking around with adorable animals. There will be a musical act, celebrity illusionist, photo booth, MC, lots of prizes, delicious food, open bar and so much more! The tickets are $120 per person, so please come along have a wonderful night out and support some great causes. For more info and to book your tickets visit http://www.trybooking.com/EGTE or if you would like to make a donation you can do so at www.mycause.com.au/page/forluca.

For more information about Kernicterus please visit www.facebook.com/newbornjaundice and http://www.kernicterus.org/.

Tags: mamamia-cares , health-and-wellbeing
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