What I wished the doctors had told me when they confirmed Danger’s diagnosis of HHE Syndrome

I love Danger’s Doctors – we have known his Paed, Neurologist and Physiotherapist for most of Danger’s life.

The thing is, when we were first told of Mr D’s condition – we were mortified.  We grieved for the loss of the life we had imagined for him.  If only we were told of the greatness that we would find in life, because of him, we may have been able to focus more clearly.

This is what would have been great to have been told at the beginning:-

  • Yes, your son has HHE Syndrome and even though it is rare, remember you have options – medications, diets and possible surgery.
  • Surgery seems terrifying and it is.  But there are other families who have walked this path before you, so please be aware that you can talk to others who have been through this.
  • Your son, despite his condition is amazing, because look how far he has come in this short time.  You have to remember that we are discovering more about the human brain all the time.  Nothing is impossible.
  • No one life is the same, including your son’s.  It may look different on the outside but in the family unit, it is about love, trust and hope – the essentials of any family – you have this; hold onto it.
  • Don’t get caught up in the hype that surrounds kids and milestones.  Your son is re-writing these pages, in his own way.
  • Epilepsy is complicated and people will tell you all sorts of misinformed sound bites, to try and downplay the condition.  It is not simple.  It is very complicated and you do have the right to be all consumed by it. You are trying to protect your child from this.
  • He will surprise us all – you just wait and see!

Now that his seizures are gone, we can see the true potential that he has.  I think when you are a parent, you are so close to your child, you almost cannot see this, as you are so fearful of the unknown.  When you are just trying to get through a day and you’ve lost count of the seizures he has had, and the behaviour is out of control, and you are at your wits end because there is absolutely nothing you can do, but take another bite or punch because he is so frightened, you question yourself as a parent and if you can go through another day like this.

But you do, you get up and face the next day, and so on.  You do it for him, for your family.

Although there are never any guarantees, the one certainty is – this IS happening and you have to make choices and decisions you don’t have full control over.  This seems almost surreal on the surface of the world we live in, where image and status seems to reign importance.

It doesn’t.  It’s bullshit.  What’s important is people, the core of people and essentially what they are made up of.

Danger is Love and we Love Danger.


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