We need your help to raise funds for Xavier, a 23 month old little boy left with permanent brain damage as a result of a common viral infection gone wrong.
Xavier was a cheeky and active little boy who loved running around, playing with his toy cars in the sandpit and getting into all sorts of mischief. However, this all changed late last year when an unexpected turn of events changed his life.
This is his story:
On 12 November 2019, Xavier started to have a fever that wouldn't go away with Panadol/ Nurofen. Within 2 days he started having diarrhea and with no improvement to his fever, his parents decided to take him to emergency. The next 24 hours turned their life upside down as he was diagnosed with a rare brain disease as a result of the gastro virus going rogue and attacking his brain cells. Xavier was officially diagnosed with Acute Necrotizing Encephalopathy (ANE) and for 19 days he remained in a coma with breathing support. ANE is a very rare and aggressive disease that typically affects young children. As the disease rapidly progresses, it has a high mortality rate and only about 500 cases have been reported worldwide. ANE has caused extensive damage to large areas of Xavier’s brain and as a result he now is less alert, has severe visual impairment, he is feeding through a gastric nasal tube, has acquired cerebral palsy, global developmental delay and gross motor disability.
Due to the rarity of this disease, the team of Doctors at the Sydney Children's Hospital in Randwick are in uncharted waters because the impact of the ANE varies with each case. Xavier has had the best of the best doctors caring for him and helping him build a rehab program that will hopefully lead to his gross motor skills and eye sight improving, enabling Xavier to be able to support himself and communicate again. The team of Doctors involved in his diagnosis and care included Neurologists, a Genetics team, a Metabolics team, Immunologists, Infectious diseases team and Acute Pain management teams.
Xavier is a fighter and in the past 3 months has made positive steps in the right direction. At times, he can hold his head up unsupported and is showing some purposeful movement which are the building blocks for his recovery. He has a long road ahead of him and the next six months present a crucial window to Xavier's recovery with intensive rehab designed to help build new brain pathways and muscle memory to increase his functionality.
Rehab involves coordination by Neurologists, Occupational Therapists, Speech Pathologists, Paediatricians, Opthamologists, Dieticians, Physiotherapists, hydro therapy etc. Xavier is transitioning out of the public hospital system and entering the private system. The cost of this therapy is around $100,000 per year.
All parents want the very best for their children, and this is never more true than the wish Xavier's parents have for him. This is where we need your donations to help fund the cost of his rehabilitation and alleviate the financial pressure off an already stretched family. The 24/7 care needed for a high dependent child is mind blowing.
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