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A Message from his parents: Jayden is an inspiration - a very courageous boy who never complains and embraces every minute of life that is available to him. When he was 3 years old Jayden suffered his first epileptic seizure. Since then he has continued to endure up to 150 seizures a day. The seizures become so severe that he currently spends one week in every four confined to a wheelchair unable to walk, talk or participate in life, enduring regular hospitalisations and recently being rushed to Intensive Care with severe pneumonia and uncontrolled seizures. Over the past 7 years we have tried every medication, every option and endured every test. Nothing has worked, and it continues to break our hearts each month as we are forced to watch our boy suffer without being able to do anything to help him.
Amazingly, in between severe seizure episodes our beautiful boy comes back to life. He is able to thrive at school, read books, enjoy the company of his siblings, play with his friends, and is learning to ride a bike and swim unaided. During these magic times we see his potential .. and this is what we are fighting with all our strength to become his everyday reality!
In May this year, with the amazing support of the local Northern Beaches community who raised the $17,000 to pay for the surgery, Jayden underwent an operation at Randwick Children's Hospital to insert a Vagus Nerve Stimulator (VNS). The VNS is a device similar to a cardiac pacemaker that is implanted under the skin on his chest and sends intermittent electrical signals to the brain by stimulating the left vagus nerve in his neck. VNS Therapy works by helping to prevent the electrical irregularities that cause seizures. While relatively rare in Australia, over 20,000 people worldwide use VNS Therapy to control their difficult to manage epilepsy. Doctor's report that in addition to fewer and less severe seizures, many VNS patients experience improvements in mood, increased alertness, improvements in verbal skills, memory and school achievements and a reduction in hospital admissions!
While the operation has not provided the immediate miracle cure so desperately sought, we are still very optimistic and hopeful for an improvement in the quality of his life over the long term. At the moment Jayden is still experiencing severe periods of frequent and debilitating seizures and pnuemonia. The reality of his life at the moment is the need for constant care and significant support needs and modifications to the home to make his life more comfortable.
We feel so blessed and inspired to have Jayden in our life and are so humbled and grateful for any support that we receive for our beautiful boy.
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