$2,459.68
$5,000
Brendo the brave Epilepsy Foundation
Brendo the brave
$2,459.68
$5,000
Epilepsy Foundation
Brendo the brave
Brendo the brave

My Story

Brendan had his first seizure at 9mths old and it lasted more than half an hr. For the next two years we dealt with hundreds of seizures that were never less than half an hr and anywhere up to 1.5hrs, always requiring ambulance attendance and hospitalisation and sometimes intubation and ICU. After numerous medications, many that made his seizures worse and many that gave him multiple side effects. Many years past with no seizure control and no answers as to why this was happening. By the time Brendan started school it was obvious that his intellectual development wasn't the same as others and by grade two we made the decision to enrol him in the special school. This was a turning point socially and behaviourally for Brendan as he suddenly fit in and was given work appropriate to his abilities. Finally at around age 7 or 8 we found information on a little known syndrome called dravet syndrome. A simple blood test confirmed this diagnosis and after many years of wondering we now had some answers. Brendan is now 14, still attending special school and is an amazing, loving and brave boy. Unfortunately his seizures have never been controlled and he still seizes every week and as well as intellectual impairment there is also a lot of behavioural issues that come with this syndrome and all the medications needed.  This means that no matter where we go or what we do we must always be alert. Swimming, showering and strenuous activities all pose extra risk that we must be vigilant about and over stimulating environments and situations rarely end happily! Even though he is now a teenager he can still never be left alone. Our day to day life is often dictated by Brendan's needs and capabilities. PLEASE consider what life would be like living with these difficulties, not just for Brendan but for his siblings also. We desperately need more research and funding for support so if you can, please donate generously and I beg of you please share our story with everyone you know xxx

Thank You

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Molly's Dravet Fund

15 Jan 2014 31 Dec 2020 Visit this campaign

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Charity

Epilepsy Foundation