We can apply this to pretty much every bad situation.

You lose your wealth &ndasndash; you soon find out who your friends are, you lose your fame you soon find out who your friends are, you’re diagnosed with a horrible disease, you soon find out who your friends are!

Well I had a disabled child and I soon found out who my friends were. I started my pregnancy with two close friends who were also pregnant each with their second child.

They were my go-to girls, one I’d went to university with, the other was the my closest friend at work and although they didn’t actually know each other I spent most of my time with one or the other.

They guided me through pregnancy with gentle encouragement and reassurance!

Finding out I had a disabled child was a bit of a slow burner, everything appeared quite ‘normal’ until she started missing those dreaded milestones and so began our rollercoaster of a ride into the world of disability and special needs.

About 6 months along that new frightening path I began to notice that one of my friends was starting to be a bit distant with me, our weekly get togethers were being cancelled or being rearranged in busy, loud places that my then one year old non sitter, non crawler couldn’t cope with.

There were a few comments that made me stop and think ‘You’re lucky she can’t climb out of her cot’ and similar 5 years on and I no longer see this friend at all – it makes me sad, I’m not sure why she cut us out – was it all just too hard, too much work, too many tears…

Who knows!

But boy did my other friend step up to the mark, the day after our very first Paediatrician’s appointment, over 5 years ago now she said to me ‘It could’ve so easily been my daughter, my family and everyday I’ll ask myself what would I want you do if it was the other way round’.

What this means is she doesn’t just offer help she goes ahead and does it – casseroles appear ready to be heated, she comes to visit and shoos me upstairs for an hours sleep, she fundraisers endlessly to help us buy expensive equipment.

She is quite simply amazing.

If you are reading this as friend of someone with a disabled child – remind yourself it could’ve been you and ask yourself what would you want your friends to do to help you?

Everyday, I thank my lucky stars that I found out who my friend was.

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.

Doctors are unsure that this is Nicole’s full diagnosis and she continues to undergo genetic testing in the DDD Study. Nicole had a lot to live up to, her older sister Natasha met all of her milestones early and people often remarked on how advanced she was.

Although Nicole wasn’t quite so advanced, she too met all her milestones even if she did walk a little late. Our Health Visitor was always pleased with her progress.

Nicole was doing everything I expected her to be doing, toddling around, chatting away and generally getting into mischief.

Life was good and I had very little to worry about.

Then came that day, a day that will be imprinted in my memory forever.

At 18 months old, 17 days after her MMR jab Nicole had her first seizure.

I think of Nicole’s life like a jigsaw – one that we had lovingly built, watching this amazing picture appear of a beautiful little girl, with an infectious smile and endearing manner.

Then along came epilepsy and slowly it destroyed that jigsaw starting in the middle and methodically picking out the middle pieces and throwing them away without any regard for what it was leaving behind.

We watched helplessly as our little girl lost all those skills she’d worked so hard to learn.

18 months later, all that was left of the jigsaw was the outside pieces.

Nicole was a shell of the little girl we once knew.

She’d lost all of her speech and all of her self-help skills, she could no longer feed herself or play with toys as you’d expect her to.

Over the years we’d tried desperately to replace the pieces, and for a few days, weeks or even months, we’d see Nicole regain some of what she’d lost.

But then a cluster of seizures would hit and like a tornado, sweep through the jigsaw blowing away the pieces we’d searched so hard to find.

So since the age of 3 Nicole has made little to no progress in terms of her development.

We have tried all licensed and unlicensed drugs available, the Ketogenic Diet, VNS, alternative therapies, prayer and faith healing.

We’ve been to Great Ormond Street on numerous occasions but surgeries have been ruled out. In the early days, we used to count the seizures.

Once we got past 70 we thought what’s the point?

Today, we very rarely count them.

Nicole has clusters of seizures of every type – from startle seizures caused by noises you and I wouldn’t even notice to tonic-clonic seizures that often result in a hospital visit.

Nicole’s seizures, 13 years later, still aren’t controlled. But, our lives are controlled by the seizures.

We can’t leave Nicole alone, even for a second, and as she gets bigger it feels like our world is getting smaller.

A drop seizure in 3 year old is very different to a drop seizure in a 16 year old – there is less space to fall in, there are more obstacles in the way, she’s harder to catch – the risks are so much greater.

We always have to think of what is best for Nicole, she loves a party but a late night or a lot of noise will definitely lead to increased seizure activity.

Do we take her ice-skating knowing that she loves it but risk her body temperature dropping or picking up a bug which again will result in a cluster of seizures.

Over the years we have learnt so much.

We’ve learnt that clusters of seizures are part of Nicole’s life – messing with medications isn’t going to help so now we know when to say no to the doctors.

I recall a time when Nicole was in hospital and a nurse went to administer some calpol, Nicole rolled her eyes.

The nurse jokingly told her off, ‘don’t be rude young lady’, I had to explain that she was having a seizure.

There are still days when I don’t trust myself, Nicole’s seizures can be so discreet – is this the usual run of the mill day or is this masking something more sinister?

I’m on constant high-alert. Nicole takes up a lot of attention and my energy and I often forget the impact that her seizures have on the rest of the family.

It’s not only the distress and helplessness that her siblings feel watching her have seizures but it’s also all the other things they miss out on like cancelled activities and how it affects their day to day lives like late school runs, making their own lunches and so on – they’ve had to grow up very quickly.

Grandparents also miss out, they don’t have the same opportunity to do all the fun things they’d looked forward to like special days out and buying treats.

We spent many years feeling very isolated as a family, the information and social networks that are available today simply weren’t there when Nicole was young.

I’ve found the support of other families in similar situations very helpful, it’s also good to hear about the medications and treatments that other children are trying.

I remain hopeful that a new treatment for Nicole and the many other children like her is just around the corner. In the meantime we continue to battle with epilepsy – the jigsaw destroyer.

For more information about Lennox Gastaut Syndrome and the DDD Study. https://www.epilepsy.org.uk/info/syndromes/lennox-gastaut-syndrome http://www.ddduk.org/

There was a lot of devastation, hurt, blame, denial and grief that followed this time. But now when I think about this, I think; why?

Why would having a disabled child ruin my life?

Oscar was born prematurely and was very poorly when he was born. We did not know if he would survive. If anything had have happened to him, that would have ruined my life.

I will admit that I did not want this for Oscar, no parent wants their child to be ill or disabled, but, Oscar has only made our life better. He is so beautiful and special.

There is not a day goes by where I am not thankful for my son as I know that some people who have been in similar situations are not as lucky as me.

Some people do not get to take their babies home.

I cannot think of anything worse than this.

Oscar is my absolute pride and joy, the love of my life. Despite everything he is such a happy and loving little boy. Although, at times things can be challenging, we just have to get on with it. Nobody said life would be easy. And, even when times are difficult, a smile from Oscar makes everything worthwhile. Oscar’s smiles can melt even the hardest of hearts.

For me, I would not change Oscar for the world, as he would not be Oscar. To me he is perfect, even if the world sees differently.

But, would I change things for Oscar? In a heartbeat.

At the end of the day it is Oscar who is disabled, not me.

If I was not prepared to do everything I can for my son including looking after him for the rest of my life, then as far as I am concerned I should never have been a mum.

So, no, having a disabled child has not ruined my life.

I am honoured to be Oscar’s mum and I couldn’t be more proud to say that Oscar is my son.

I’ve never said this to anyone but, boy, can my typical 4-year-old drive me crazy sometimes (most of the time).

I suppose I feel I can’t really say this out loud because I should just be so happy (and relieved) that he is just that, a typical 4-year-old.

Don’t get me wrong – I absolutely am!

But my goodness, no one warned me that he’d ask questions incessantly.

Or that he would have the ability to destroy a tidy room in seconds; that he could empty cupboards at the speed of lightening; that he would be so headstrong and determined; he’d knock my ironing pile over, just as I’d emptied the basket; or that he’d say the most embarrassing things in front of complete strangers.

And nobody warned me that it would be just the tip of the iceberg.

He drives me to distraction, but I love it and I wouldn’t change him for the world.

Every little bit of mischief, cheekiness and downright naughtiness is always under-pinned with a feeling of sheer joy that he is doing all these amazing things with such ease.

Things that his older brother can’t do and probably won’t ever be able to do.

I definitely think having my disabled child first gave me ‘something’ – I don’t quite know what – skills, patience, a different outlook…to parent my typical child differently than I would’ve if he’d been my first.

I imagine myself shouting, snapping and losing patience easily but life takes on a different perspective with a disabled child.

A tidy house, an immaculate garden, worrying about other people think – it just doesn’t matter anymore.

Our home is about fun, laughter, and games – who cares if we chip the paint on the walls playing wheelchair tag or we use the wrinkled bed sheets to make a den big enough for an amazing little boy, his big brother and his wheelchair.