Shauneen is mum to Aaron and Adam. Aaron is 9 and Adam is 3.  Today’s post is Aaron’s story – he has FIRES disease, an extremely rare form of Epilepsy. A forest fire is an uncontrolled fire occurring in nature. Sometimes, the forest fire is so large that it takes a long time for the firefighting crews to gain control over the situation.  This could result in massive destruction. A doctor once described Aaron’s epilepsy as a ‘Forest Fire’ – but for us we won’t ever gain control – it’s just mass destruction.

Aaron was a happy little boy, he loved his football and he had an answer for everything. 

He had started nursery in the September of 2008 and was doing really well. His nursery teachers said he was a joy to have around.  The Christmas after he started nursery through to Easter was difficult for us, Aaron was very unwell during this time. He had a chest infection, a persistent cough and although he was still his happy playful self, things got worse and he was vomiting up to 40 times a day.

My concerns were dismissed; ‘it’s viral’ ‘you’re worrying too much’ and even ‘he’s playing for attention.’ But, one morning I woke to find Aaron clammy, waxy and bubbling at the mouth – we headed to the hospital.  Aaron was admitted for 5 days with low blood sugar but after asking again for a reason for the vomiting and coughing they went on to do various tests and a CT scan but he was eventually discharged – we were none the wiser.

That very night, Aaron had gone upstairs, I called to him but he didn’t respond.

I found him in the bathroom having what I now know to be a seizure.

We spent over a year trying to understand what was happening with Aaron even spending time in PICU. They’d flown in a Doctor from Birmingham Children’s Hospital and we got a diagnosis of FIRES disease.  Aaron’s doctor had worked in Melbourne where she had seen a case similar but extremely rare. She decided to test Aaron and we waited 12 weeks to be told this was an auto-immune/post viral related illness. 

FIRES disease was only newly diagnosed a few years previous and with no known cases in the UK so we had no clue what we were dealing with (neither did the doctors), in fact the not knowing what was ahead of us has probably got us through the last few years.  When Aaron had a viral infection the previous year, his immune system had gone into overdrive and started attacking his body,which resulted in his seizures, Great Ormond Street hospital decided because of how rare and destructive this illness was that they would have Aaron as a primary patient, and he is now a candidate for the first UK trial for the medical Cannabis treatment due to start 2015.

There is only one other case of FIRES disease in the UK and a very small number worldwide but we do draw strength from each other and learn from each other’s experiences.

It’s difficult to think back to the early days after Aaron’s diagnosis, he was very aware of what was happening to him and he was frightened. He would say ‘the fizzies are coming’ when he felt his seizures and ‘am I going to die?’ – Which was heart-breaking for us. 

FIRES disease is just that - a fire that swept through his brain, we watched helplessly as his speech disappeared, his understanding, his colourful and bright personality his mobility – everything was destroyed. Our little boy, who once had the nurses wrapped around his finger with his cheek and his charm was slowly being destroyed with FIRES.

Aaron is still regressing, his epilepsy is causing other unpleasant conditions; a psychosis type disorder and Eases,which causes Aaron’s brain to become overactive when he is tired. This only affects 1% of people who have epilepsy and sometimes I do think to myself ‘What are the chances?’

We have to remember that Aaron is still here, he’s still with us and I can still see a little spark in his eye – it’s what keeps me going and seeing his big infectious smile, but at Birthdays and Christmas we do grieve, we grieve for the little boy Aaron should have been, I’m sad that Adam doesn’t have an older brother that he can play with, I’m sad that Aaron doesn’t have the life he should have had and I’m sad that I can’t watch our wedding video because it shows a laughing, chatting, running Aaron. 

I find it difficult to have ‘pre FIRES’ photos of Aaron around or any of his things from his first 4 years. They’re stored away and I know that in the future there will be a time that they will represent precious memories but at the moment while we fight for Aaron, they’re just too sad a reminder of what could’ve been – what should’ve been.

FIRES disease means having a plan but not being able to plan.

I know this doesn’t make sense but it’s our life. We have a plan for Aaron, it does change depending on how he is and at one stage it was palliative care plan, but we always have a plan.  On the other hand, we can’t plan ahead – we can’t plan days out, holidays or even a trip to the shop. Aaron may not have visible seizures everyday but when a cluster of seizures hits we know we’re in for a bit of trouble – this can happen every 7-10 days and we get no indication that a cluster is on its way, just recently he went into status resulting in him spending time in PICU on a ventilator and in an induced coma where he seizured for a continuous 8 days.  People don’t always understand what it means not to be able to plan ahead, it means we let people down – a lot. We don’t mean to but it’s just the way things are. We’ve lost a lot of friends over the years, I think they just got tired of asking and tired of us cancelling.

But we’re thankful for those that are still around and the support of family – even though looking after Aaron can be a scary experience. We’re an extremely happy family, one that’s been strengthened by what we’ve been through and for that I’m thankful. I hope that by sharing Aaron’s story we’ll help raise awareness of the devastating impact of epilepsy. And from one mum to another, ‘it’s only viral’ is not good enough if you are worried about your child - trust your instincts.

Febrile infection-related epilepsy syndrome (FIRES) is a severe brain disorder that develops in children after a fever. This condition results in sudden seizures and leads to declines in memory and intellectual ability. FIRES can also cause psychiatric disorders or problems with motor skills.  The cause of FIRES is unknown, but may be related to infection, genetic susceptibility, an autoimmune disorder, or a problem with metabolism. Treatment involves anti-epileptic medications to manage seizures, but they do not usually work well.

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