Othohara Syndrome – One More Aspect Of Epilepsy

There are many, many different diagnoses of Epilepsy; you may believe that it’s one generalised condition, but it isn’t. Much like Autism, “If you’ve met one person with Epilepsy you haven’t met them all”.

Thanks to Epilepsy Action on Facebook I was alerted to this moving story about baby Rafferty Binns, who has been diagnosed with a rare form of Epilepsy known as Othohara Syndrome. This is the same form of Epilepsy that killed David Cameron’s son three years ago, and the survival of this little lad is nothing short of a miracle. And just look at him – isn’t he precious?

Children like Rafferty offer hope to the despairing. They tell you that your situation could be worse. They are with us to say “Hey, I’m surviving this; you’ll be fine”.

Of course, it takes special parents to believe in special children like Rafferty – and Nina and Jon Binns are no exception. In fact they are an inspiration. They have been through hell and back, and emerged triumphant.

This will be an ongoing battle for the family, but the hope is there. News in today is that Rafferty has now given his first smile!

Who has inspired you today?

Article linked to with permission of Jon Binns, Rafferty’s adoring father.

About Missus Tribble

Media volunteer for Epilepsy Action (UK) and advocate for both epilepsy and autism awareness. Would like a Tardis when I grow up.
This entry was posted in 2012, Always Look On The Bright Side Of Life, Attitudes, Epilepsy, Epilepsy Action, Epilepsy Awareness, Jon And Nina Binns, Othohara Syndrome, Rafferty Binns. Bookmark the permalink.

9 Responses to Othohara Syndrome – One More Aspect Of Epilepsy

  1. willowdot21 says:

    Great article, who inspired me today? Apart from you the blind footballers at the para olympics!

  2. Daniel Digby says:

    Thanks. That’s another one I’ve never heard of.

    I assume you’re familiar with status epilepticus. In one of Philip Kerr’s novels, The Grid (I think it may be Gridiron in England) he describes SE in a really unusual way that makes me think he knows little about it. Are you familiar with the book by any chance?

    • Missus Tribble says:

      I’ve never actualy heard of the book, but will be certain to look it up – thank you!

      I am sadly all too familiar with SE – I’ve gone through it twice in the last three months!

  3. paulaacton says:

    Actually just before this I sent an email to someone I bumped into last week who I hadnt seen for a while she may not have inspired me but she was very supportive helping me in my battle to get through uni (sadly because of health issues I ddn’t finish) but she did help me complete the first two years and was always at the end of the phone to help me out when it was looking like I would never finish even the first year

  4. Yep, it’s pretty good!

    • Missus Tribble says:

      Here’s hoping the little dude has a lot more life in him yet!

      Also, yet more proof that some anti-seizure medication can do more harm than good.

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