Hi and thank you for reading about our beautiful almost 12 year old son Ben. Ben is suffering from uncontrolled epilepsy.
Ben has been accepted for an Epilepsy Seizure Alert dog by Smart Pups, and we need to help them raise the funds to train his dog!
Our son Ben is very precious to us as our only child, however life with Ben has never been easy, for him or us.
Ben was diagnosed with motor skill delays at 3 & 1/2 years old, then autism, speech delays, and intellectual disability at 6 years old.
Ben has had a lot of therapies and has benefited from an amazing special education school.
But 18 months ago, when life was starting to 'normalise' and we felt we were getting on top of his issues, Ben had his first major convulsive seizure. As a mum, not knowing exactly what a fit was, my first instinct was that he was suffering a stroke and going to die, but as the jerking of his limbs began I remembered seeing something about epilepsy and rang 000.
Ben had experienced a tonic clonic, or in the old words, grand mal, seizure. After a referral for a brain wave test which showed abnormal brain activity the next month, and a second seizure on Boxing Day 3 months after the first, we had Ben's diagnosis of Generalised Epilepsy Disorder.
Medication initially controlled the tonic clonic seizures, however it quickly became apparent Ben was also suffering from multiple hourly absence seizures.
Fast forward to the last 6 months. Ben and our family have all been through a horrid time with constant trials of different medications, the neurologists trying to control or reduce the absence seizures, to no avail. He now also has focal seizures and regular tonic clonic seizures at night time, plus at least 6 absences every hour!
I, Kylie, as his main carer have moved into his room to be close at night when a convulsive seizure starts. If a convulsive seizure goes for more than 5 minutes, it is starting to compromise his brain.
He has to be supervised in almost every daily activity. He has very little independence or privacy, and to change this, we recently applied for a Seizure alert dog through Smart Pups in Queensland.
We are thrilled that they have taken Ben on board. The full cost to purchase, feed, train, and care for the puppy over 12 to 18 months is $25000. Smart pups have asked us to contribute at least $20000 through fundraising.
Ben's dog will also be trained in strategies and skills to reduce the impact of his autism on his life, as his emotional regulation and behaviours have worsened due to the life limiting impact of his epilepsy and his immense frustration at all the things he cannot do that he used to or that his friends can.
Ben already has a beautiful relationship with a cousin's therapy dog, and Ben is very distressed after each visit having to leave the dog behind.
Please give what you can to help us reach our target quickly so Smart Pups can start training a dog for Ben, Ben's Best Buddy. It will take at least 1 year.
Thank you for reading and sharing our story and contributing what you can.
Kylie & Andrew Stewart