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Ethan Jae 's Assistance/Seizure dog

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Our little boy has Tuberous Sclerosis Complex. A rare disease which we means tumours grow in many areas of his body... The brain being the most problematic. He has had four brain surgeries to remove over 16 tumours.... which have failed to control his seizures. He now has autism, uncontrolled epilepsy and global developmental delay. Speech is extremely difficult due to the removal of tumours from both his left and right temporal lobes of the brain (the speech centre region). He frequently attends hospital and has many procedures and tests. He is an amazing little boy, dealing with huge mountains.
We are trying to raise funds for him to have a seizure/ autism dog trained for him. To allow him to be independent, to eliminate having to be strap in a pram or alway having his hand held or a harness on. A canine friend to be with him always, through the fear of all he has to deal with, to keep him safe and to alert people to his seizures. The dogs are also trained to track him is he becomes lost. We live on a property and it is my greatest fear to lose him. We have lost him four times, and twice found him in extremely dangerous situations- once a car swerved to miss him on a road, the other stuck on top of an industrial fuel tank. Please help our little man have a safe future with independence.

Ethan's story
Ethan Jae appeared a normal, gorgeous baby boy... Who laughed hysterically when you undresses him. At 5 months of age he stopped laughing. By six months he was in his own little world. He didn't look at us and would not engage. I was voicing my concerns but they were dismissed. He appeared autistic. At this time he started to seizure- like a newborn startle reflex. The local country doctors said he had silent reflux- which seamed reasonable as it looked like a deep pain. For one month he was treated on numerous medications but continued to deteriorate. In the final appointment the local doctor informed us he had food allergies and to come back in two months with diet restrictions. His seizures were violent at this time, distressing for us all as he could not be held. He seizured day and night. I arrived home knowing the Dr had no idea and with some research and YouTube Video discovered he appeared to have infantile spasms. With further research discovered they can be caused by tuberous Sclerosis Complex. Upon researching TSC was devastated as Ethan had the typical skin lesions that were diagnostic of TSC. We packed bags and put Ethan and his three yr old sibling in the car and drove the 5 hours to the children's hospital. He was rushed through emergency due to his seizures and the diagnosis was confirmed. I cried that first week sitting in the ward with our beautiful, perfect looking little boy. Dreading his future, all my hopes and dreams for his life shattered. The following years have been very difficult for our family. All of us fight different battles due to this terrible disease. However our little boy fights daily battles with such a humour and love. His passion is machinery- trucks, tractors, headers, hay balers.... He is a master of escaping. My heart dreams of him finding his place in this world, where he can make a contribution and feel accepted and loved. An autism/ Seizure assistance dog would not only achieve this, but keep him safe from harm.





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    Organizer

    Sarah-Jane Deckert
    Organizer
    Victoria, VIC

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