Luca
Donation protected
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. We would love to raise some funds to assist with Luca's medical needs.
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. We would love to raise some funds to assist with Luca's medical needs.
Organizer
Micaela Bree Alcerreca
Organizer
