There’s a saying about parenthood which I have come across more than once – Yes, the days are long but the years are short –

It is true.

It is especially true when you are raising a child with a progressive illness.

The years have gone by quicker than I had ever imagined they would.

There have been days over this past year that have really felt never ending –

The days Ethan was unwell, or the days I worried all day long about Ethan’s obvious new decline or the days that turned into nights of no sleep, little food and no comfort.

Yes, some days over this past year have been so very long. In fact, a lot of our days have been so very long over the years in general.

It’s funny how the ‘good’ days whizz by – Ethans huge big 16th birthday bash which all fell into place thanks to the general public and those who read my blog.

The kindness we witnessed over his birthday and the build up to his birthday will be something our little family treasures forever.

We are fast approaching Ethans 17th birthday.

Every birthday brings a mix of emotions for all parents, yet for parents like us it brings up stronger more pronounced feelings –

We often feel fearful – what is my son’s future going to look like?

Or anxious – we are now facing the world of adulthood with a child who may look like an adult but isn’t – they are no longer ‘cute’ and excused.

They grow beards and that ‘cute’ shouting sounds much deeper and causes more people to stop and stare…the worries truly are endless.

I personally become filled with memories of yesterdays and am always shocked at how quickly time has gone by.

It feels like only a few years ago Ethan was causing havoc wherever he went.

He would assure me he wouldn’t do ‘X’ ‘Y’ or ‘Z’ – but as soon as he got the chance to run wild he took it with both hands and legs.

Sometimes I think deep down he may have known that he would not always be able to run – And sometimes that thought haunts me.

Ethan had an obsession with my glasses so much so that I got laser eye surgery because it was cheaper than having to replace my glasses so often.

He would grab at my glasses and break them then apologise only to do it again.

He would also hide my glasses – my mother’s favourite story about Ethan is the time he gently took my glasses off me after I refused him another biscuit.

He asked if I could see him to which I replied “no” (but I could, my eyesight wasn’t that bad).

He moved my glasses out of my reach and crawled to the biscuit tin asking me the whole time if I could see him –

I continuously told him I couldn’t – then he quietly opened the tin box and scoffed as many biscuits as he could, while I pretended to search for my glasses.

He turned to my mother and motioned for her to keep quiet.

Of course she did but she tried her best to hide her laughter while I kept asking what the noise was.

Yes, the years are short.

Ethan has always had a way with people.

Sometimes when I talk about the things he used to do, people who know him now can’t comprehend that the same boy sitting in the wheelchair in front of them once told a woman who was staring at him to ‘F*uck off”!

And that the very same boy thought people who used wheelchairs were ‘Robots.

Despite our best efforts, Ethan was convinced that a woman he met at an MPS gathering was indeed a robot because she controlled her own chair.

He decided to call her a Robot and run from her – which to be fair to her she played along with and didn’t seem offended.

Yes, the years are indeed short.

Ethans pending birthday is stirring up emotions in me that I hide so well.

It’s funny how having a child with a terminal condition can teach you so much but also ensure you learn to box away the sadness or the fear.

I guess, it’s the only way to raise a dying child, you do need to ‘box’ it away.

And some days, months even years that’s easier.

It was easier in the early days to ‘box’ it away because I truly believed Ethan would be given a drug that would eventually cure him or at least stop the syndrome in its tracks.

As the days turned to months and the months to years…

Slowly I realised that anything like a ‘cure’ or even a drug to ‘stop’ the syndrome would never be given to my son and that, that is something that no one wants to hear or admit to.

But Ethan is turning 17 and we have to face it. Face it in all it’s glory and fear.

We have the same fears as any other parent of a child with special needs moving into adult services but there’s the unsaid, the upsetting reality that even I am afraid to admit –

A life limiting condition comes with a life expectancy.

We were told Ethan would not see adulthood – yet here we are, on the brink of it.

We are afraid, hopeful, scared and happy.

What kind of adulthood will Ethan have?

I have no idea. I imagine it to be filled with adventures, love and family.

What I do know is that, yes, the days may be long and the years short –

I am happy about that!

let my days be long, let them drag and even when they are bad or sad I am going to find comfort in their length because I do know that the years are indeed far, far too short.

Buckle up Ethan, we are rocketing into adulthood!

There are so many great things about being a parent to a child like Ethan.

People tend to not know that.

They tend to think or imagine our lives as sad ones or a life full of struggles and battles; while on one hand that is absolutely spot on, there are also some pretty cool things about being Ethan’s mammy.

I’ve compiled a list about the ‘perks’ of being a parent to a child with special or extra needs – and yes, I purposely choose the word ‘perks’ because there are perks, well, I see them as perks!

One: The Wheelchair

You want to see some kindness in the world?

Watch how helpful people are when they see you struggle with a wheelchair – my gosh people can’t do enough for Ethan or I as we try to navigate a world designed for working legs!

Two: The Peeps

Ah man, the peeps, my peeps!

We met them absolutely everywhere – without Ethan I don’t think I would have ever met some of the kindest, most genuine, most caring people ever to grace this earth- people who care for Ethan because they choose to – they are the best kind of people.

Three: The ‘Inside’ Track

Ah yes, my fellow SN parents are smiling at this one. We all know how the ‘inside track’ works – we know who is who and how to get to the who of the who-ness, oh yes there is a whole other language when talking about the ‘inside track’.

We can also tell you tales that would leave your mouth open about what goes on within the ‘inside track’ – yes, indeed, we each have a story or twelve to share regarding the ‘inside track’ on services, hospital, appointments and even consultants – but never worry, we don’t gossip… we simply ‘share’.

Four: Assumptions

Sometimes it can be annoying when people assuming anything about you, other times it can work to your benefit. And yes this is a perk!

When queuing with my son, simply because he is loud or in a wheelchair, people let us skip! Ah, it’s great, I like this perk a lot.

Five: Free

Look it, I am not going to lie here and it may seem crass but it is what it is. People, I mean absolute strangers, give Ethan things for nothing. I don’t know why.

If Ethan likes something in a shop, I do tend to buy it but Ethan can often like more than one thing or something way out of my price range and that’s when it has happened – some random kind person insists on buying what he wants or the shop owner tells him to take it!

Now, it hasn’t happened in a while but back when Ethan was partial to a whopper of a meltdown, he was getting freebies left, right and center.

Six: Learning

I am always learning. Every single day I learn something new.

I don’t even know I know half the stuff I know until a friend rings or my sister rings wondering what to do with their neurotypical child who is unwell – I normally know what to do! Isn’t that amazing?!

There are things I know now that I would never have had any interest in learning when at school/college – but now, now I can talk you through a peg clean, a site clean, what to use on an infected site and I can show you some physiotherapy to help with carpal tunnel pain or joint pain or mobility issues, not to mention how to spot a chest infection before it even becomes one!

Oh, I also have a vast knowledge about drugs – the legal kind (FYI)

Seven: Experiences

We as a family have had some amazing experiences because of Ethan. We have been witness to some truly touching human kindness.

We have done things we would never have done had it not been for Ethan – for example, we got married on Don’t Tell The Bride – yes the TV show, because Ethan has a terminal condition we wanted to be married and to have Ethan be a part of our day.

I personally, would never have started my dream of writing had it not been for Ethan.

Ethan drives me to be better, to do better, and to always try, without him, I truly believe I would still be dreaming about writing and working in a job which just pays the bills. He make me live.

Eight: Gross

There’s nothing that can gross me out. NOTHING.

I have cleaned it all, moved it all, picked it all up and off floors and walls – I am actually able to clean the dirtiest of nappies while not smelling it at all!

No, I don’t use a face mask, I simply breathe through my mouth and there it is – the big secret on how to clean up a mess without getting sick yourself!

Nine: Laugh

I laugh. I laugh an awful lot. Sometimes I laugh at things that parents like me would kill you for saying aloud.

See, there’s a rule within my community, we can joke and laugh about the sh** which happens in our lives, but you can’t – it’s a little like that rule where you can call your own mammy names but no one else can.

I always had a good sense of humour but since becoming Ethan’s mammy I really laugh at a lot more stuff that would have the average parent crumbling with embarrassment.

Ten: Perspective

I find I write a lot about perspective but it is true – my perspective is what keeps me going, without Ethan, I don’t think I would be capable of having such a healthy perspective to most things in life.

It is a shame for all of us that we cannot gain such a perspective without having a child like my son but I suppose that’s why I find myself writing about perspective quite often.

It is like a superpower given to parents like me and one we must share with parents not like us – There is far more to life than grades, milestones, awards, achievements…all any of us have is the here and now – be present in the present, as best you can.

So there you have it, just the tip of the list of the perks of being Ethan’s mom

His hand reached up. Gently I held it. I bent down to his eye level.

Quickly his other hand smashed into the side of my face. His boot cracked repeatedly off my shin bone.

For a guy who stood at 4 ft 0 inches he had the strength of an Ox.

He roared in my ear as I refused to let go of his other arm. I began to hum trying to help him regulate himself.

I got closer to him. I moved quickly behind him restricting some of his movement for his safety and mine. He roared for me to let go.

I hugged him securely, letting him feel the weight of my body up against his.

“I will, I will in two minutes” I calmly responded. We stood in the middle of a busy shop rocking back and forth until, finally, the storm had passed.

I remember this particular meltdown for three reasons.

Reason one was that it was over in under a minute. This was the beginning of Ethan learning to self regulate with a little bit of help. This was also the beginning of Ethan having less and less meltdowns.

Reason two is that Ethan had just had carpal tunnel release done on both hands (his hands were in soft casts) I thought that had meant that the casts wouldn’t hurt. I was wrong.

Reason three is that Ethan gave me a black eye. Now, I know and you know that the child couldn’t control himself and didn’t mean it but the general public tend to think that if a woman has a black eye there is only one reason for it.

My poor husband.

He’s not small. He’s an ex rugby player who stands a good head and shoulders above me.

So sit back and relax and read my little tale about that one time my husband had a wife with a black eye and a son who’s both hands looked to be broken to the untrained eye.

“Fug Fug Fug” his tongue was firmly between his teeth now. He shook his head vigorously while stomping his feet.

We both knew that we needed to get Ethan out of the playground as fast as possible.

Back then we were thankful that the general public had no idea what ‘fug’ meant when Ethan would roar it at us. (Yes, it’s that really bold F word)

The playground was filling up around us and we had to get back in ten minutes to collect our other son from his play date.

I was wearing sunglasses despite the cloudy weather as I had had enough of the stares over my fresh black eye.

Ethan ran.

We both gave chase.

We really were always surprised at how quick he could run considering how restricted his joints and mobility was.

There was nothing absolutely nothing more fun to Ethan than getting a chase. We like fools chased him around and around.

I finally caught him while my husband blocked the gate he was planning to escape through.

Whatever way I caught Ethan he spun around and knocked my glasses off.

“Don’t let go of him” my husband bellowed from the gate as he began to run towards us.

I had Ethan in my arms while he tried to swing his head back, almost connecting with my face each time I tried to get closer to my disregarded sunglasses.

My husband was still reminding me; ”You have him, hold him!”

Ethan swang one of his casted arms at me. Remembering the pain of the time that thing connected with my face, I let the kid go.

He won. I didn’t want two matching black eyes.

He ran behind me and wildly into the now silent playground.

My husband ran passed me and grabbed Ethan up in one swift move and carried him under his arm like a rugby ball.

Ethan always loved this move and began screeching with what we knew was delight.

Ethan’s screeches, I should state to be fair to all involved, sounded a little like a high pitch cat, the happier or more excited he got the higher the screech went.

He would then chew his fingers and kick his legs when the happy excitement started to become too much for him to handle.

He was not kicking or chewing, so we knew he was fine and happy.

Both of us relieved and tired after our unexpected workout, we laughed as Ethan declared it was “timed to go” and happily let his daddy carry him sideways out of the playground.

We got as far as the car when I realised I had forgotten my sunglasses.

I ran back.

I ran back to find a few mothers standing around talking about ‘that brut of a man and that poor woman and child’.

“Are you ok?” one of them asked as I got my glasses and tried to sneak away.

“Aw thank you” I smiled, thinking how good of them to ask.

That must have looked odd to you ladies but I assure you my husband isn’t a brut” that was my subtle way of telling them that I had overheard them.

“Ok. And your son’s broken arms?” one spoke up.

“Oh, yeah, no, he hasn’t broken anything, he had carpal tunnel release” I knew I sounded like someone who was making excuses but I didn’t know what else to tell them and I felt compelled to answer them.

They exchanged some looks and nodded at me.

“We can see you got a bang on your eye…”

“Yeah” I felt really uncomfortable but didn’t want to say my son did it nor did I want them to think my husband did, so I said the most cliche thing in the world, “I walked into a door”

“Thanks” I offered as they stood in silence looking at me.

“Do you need anything?” one of them offered.

“Me?” I laughed nervously, which made me think I was making them think that I needed help to escape or something.

“Apart from the winning lotto numbers …” I tried to sound funny or light or anything other than a woman afraid of her husband.

“Thanks again ladies, am thanks, I really have to go” I turned to leave when a hand tapped my arm and a soft voice told me “there is help out there”

I said absolutely nothing.

I figured the more I denied it the more I sounded like an abused wife.

I made my way back to the car to find my husband and Ethan enjoying a bag of sweets.

“Let me guess, I am the number one suspect for the shiner”

“Yeah AND for Ethan’s casts”

Ethan laughed.

“Did you correct them?”

“Yeah but the more I said the guiltier you were looking, to be honest”

“Ethan, I am begging you to never give mammy another shiner. Please. I will take the shiner no problem but don’t hit mammy again in the eye. Actually, don’t hit mammy at all buddy, ok?” my husband turned to Ethan who was now happily sticking his middle finger up at two of the park ladies as they walked parallel to our car.

“Just go!” I laughed.

And that was the last time my husband came anywhere with me when I had a fresh shiner from Ethan – not to say I got them often but I’m pretty sure he connected with my eye on at least two more occasions.

These are the odd or tricky situations we can find ourselves in when we are the parents of children who have special needs.

Even when the general public think they are doing a kind thing they can be still so very wrong; it sure is a hard balance to find for us all.

Tears, Tempers and Tantrums.

Oh man, eh?

If there was one simple trick to help avoid these behaviours wouldn’t parenting be a whole lot easier?!

Sadly, there is not one trick- there isn’t even a step by step guide,there is however; luck, patience, practice, frustration, embarrassment (even if we don’t like to admit it), avoidance, understanding, acknowledgement, pretend-we-didn’t-notice and finally, acceptance.

Tears, Tempers and Tantrums (3T’s) are all part and parcel of having a little mini version of your beautiful self in this world.

My experience with my three boys regarding these 3T’s (and no,not Michael Jackson’s failed nephews band,yep I am showing my age!) was very different for each of my boys.

Ethan my eldest, has always been the best 3T-er ever.

Hands down, Ethan wins. Ethan’s brothers own versions of the 3T’s never really bothered us, simply because Ethan had done it all before them and at such an intense level that their 3T’s were almost laughable in comparison.

I am pretty sure I am not the only parent of a child with such complex needs like Ethan has, that when the siblings who are ‘typical’ try it, we just kinda eye roll our way through it.

It is a perspective kinda thing really, isn’t it?

Ethan has never really understood waiting,’no’ and ‘stop’ – he saw these words as an invitation to throw some amazing 3T’s in the most mundane circumstances or in the most awkward of places.

Looking back, I can tell you, our little man kept us on our toes.

He certainly paved the way for his brothers who, try as they may, never really had me out in sweats while they threw their very own 3T’s.

Ethan would have me panting, pleading, distracting, sweating, begging for the ground to open up while he threw a regular 3T.

We tried everything.

I mean absolutely everything, but regardless of our picture boards or our explaining about what was going to happen next, our little dude could not help but throw a 3T our way.

It took us years and years of understanding and educating ourselves and those around Ethan to accept that these 3T’s were not his fault nor were their our fault.

They were simply our little man’s reaction to things and situations he could not understand or cope with.

Mostly we had to learn about sensory overloads and what that meant for our son and try our best to help him through these overloads.

As the years went by, Ethan 3T’s calmed somewhat.

Don’t misunderstand me, the boy can still throw a whopper but these days he uses them sparingly (mainly due to Ethans syndrome progressing).

What Ethan taught us about the 3T’s during his younger days was that we were not to blame, nor was Ethan.

If there is one thing I could say to any parent out there who’s child throws plenty of 3T’s it is this : IT IS NOT YOUR FAULT.

Yes, all children know how to throw a 3T, lets face it, the only kiddies who don’t are the kiddies that ‘Mary’ has yet to have – you know ‘Mary’, we all know ‘Mary’- if I had a child they would never do that or that and if they did by god they’d never do it again! BULLS**T ‘Mary’.

There is something however, slightly more intense about the child throwing a 3T for no apparent reason, the child who cannot regulate themselves as well as other children, that is the child that draws an audience of ‘Marys’ or ‘Know -it -all Noras’.

Those parents who deal with this are my kin, you are my people.

You are my heroes and you should all know that you are amazingly capable even when you feel like you aren’t.

This is so frigging hard to deal with especially in public.

On one hand you are trying your level best to help regulate your child while an audience of (probably ‘Marys’ & Noras) gather to watch you, all while tutting and judging you.

It is such a horrible feeling.

It forces us to get angry. We feel like we have to explain our child’s behaviours to complete and utter staring strangers.

This makes our faces go redder,our skin wetter while our mouths seem to suddenly become dry.

It takes us away from our child, even for a split second, and that brings guilt to the forefront.

It’s a vicious cycle and that is just us!

Our child who is currently dealing with one hell of a sensory overload that they feel like their world is spinning rapidly out of control is having such an intense meltdown that all they need right there and then is a safe place not a parent or carer who feels like they are being harshly judged.

There are no tricks or tips to stop this from happening to a child who has sensory issues, autism, social anxiety…

There are only tools to help both of you understand the triggers,predict the behaviour, manage the predicted behaviour and wing it.

That’s the truth. Nearly, if not all, parents we see are indeed winging it- even us, the experts in our children who have extra needs.

All we can do is be patient,be present and remain calm; which is so much easier to say than actually do;but in time and with plenty of experience you may very well find yourself calmly helping your child and not even noticing the ‘Marys’ or ‘Noras’.

Of course once it’s all over and the ‘Marys’ are slowly moving away, you may even take a bow… or that could be just me?

It is estimated that there are 350 million people worldwide living with a rare disease.

That is the only statistic I will share with you today. I have written many, many times about the statistics around having a rare disease.

I have written about awareness of rare diseases and how we as a society can help encourage more research into rare disease.

I have written every year for four years about the last day in February and the fact that it is International Rare Diseases Day (RDD)

To find out more about the campaign this year please visit here.

This year I wanted to share with you all the reality of the things people have said to me over the years regarding Ethan having a rare disease.

Some make me laugh now but didn’t at the time, others still make my blood boil and some are just lovely.

I have a feeling I am not the only parent to have been asked these kinds of questions regarding their very own rare gem.

Ten Things I have heard since my son was diagnosed with a Rare Diseases…

Really? Is it that rare. Are you sure… I’m only asking because I am nearly 100 percent sure that there was a boy in my friend’s cousin’s neighbourhood who had that or something like it and sure they never mentioned rare.

Yep, I am 100 percent sure that the condition my son lives with is rare but hey maybe you’re right and I am wrong.

Aww you’d have no idea that there was anything going on with him, he just looks a little bit Down syndrome or a little Autistic… to be honest I thought he was a dwarf …isn’t that rare too though?

These are the kinds of comments that really shouldn’t be in your head but if they are, you should really never EVER say them out loud to anyone especially a parent of a child with Down syndrome, Autism, or Short stature,in fact just don’t say it to any parent of any child with a disability.

Trust me, it will save you huge embarrassment and may I suggest googling the terminology you are using – you twat!

Sure aren’t we all rare eh?

No. No we are not all rare.

We are all unique. There’s a difference. Come back to me when you’re the one explaining to a doctor how to medically treat your child.

How did they diagnose him with him being so rare? I mean, a lot of people are probably walking about with the syndrome and not diagnosed. When you look at it like that, you’re very lucky he got diagnosed.

Oh dear. It took almost 6 years to get a diagnosis for Ethan, considering his syndrome, I am pretty sure there are parents out there who know something is going on with their child and they are on the cusp of being told it’s a rare genetic metabolic terminal syndrome called Hunter Syndrome.

I am also pretty sure there are no undiagnosed adults living with Hunter Syndrome, as getting to adulthood without having a metabolic issue glaring at a doctor is very unlikely…

Children are generally diagnosed between birth and 2 years due to the issues which present.

Normally a child is given an appointment with a metabolic specialist in a specialised children’s hospital before discovering what is ravishing their child.

I Googled the syndrome and I have to say it looks like there’s a cure coming, so never ever give up hope.

This is a tricky one because I know this is intended to give me hope and it is well intentioned.

So, I nod and say yes, yes… money is the issue, have you donated?

Did you happen to notice that that is being driven by parents? There’s no funding. No government grant or aid to help.

Ethan will never benefit from this possible cure (due to his age) but there are children out there who will.

So, if you’re going to talk to me about a possible cure, at the very least have donated, it is the first thing I will ask you.

So you don’t hear much about rare diseases day, like ever. I had no idea until I read your piece that RDD is the last day of February.

Thank you. Thank you for reading my writings.

Share it. Please share it, commenting isn’t enough. I need you to share it.

Do you know that if there was more awareness within the general public and within the medical profession, children would be diagnosed sooner, families wouldn’t have to fight to be heard by all the wrong doctors and research into many rare diseases would begin as awareness would lead to funds and funds lead to research and of course research leads to treatments and cures.

What is it like explaining to doctors about Ethan? Do you get annoyed or do you like knowing more than them? (when it comes to Ethans syndrome) I once told my GP about Ethan and they had never heard of MPS before let alone Hunter Syndrome, it felt good.

So many friends and family who know Ethan well have asked me this and the truth is in the beginning I hated it because I assumed I wasn’t explaining the syndrome right.

I would see their eyes glaze over and then they’d excuse themselves while furiously going through Ethan’s file.

Now, I am more comfortable with gently explaining it and telling them what it is I think Ethan needs in order to feel better.

There is a mutual respect between GP’s and parents like me.

Aww bless it’s not easy but sure it could be worse, I mean at least it’s not something like cancer he has.

This comment especially when cancer is used makes no sense to me.

If my son had cancer he would have treatment and that treatment might get rid of the cancer.

Having a rare syndrome like Hunter Syndrome means that there isn’t enough research or people alive with the syndrome to force government into funding a research lab in order to make a drug which might cure the syndrome.

There is no drug, there is no cure and there is no government research into this syndrome.

Parents in America, England & Europe are the ones trying to raise funds in order for a lab to be able to do some research into some form of a cure for Hunter Syndrome because it is rare and rare doesn’t register with governments.

Do you know how many people have Ethans syndrome? Do you know how many of them live in Ireland or England?

I like these kinds of questions.

It makes me think that there is a genuine interest in Hunter syndrome – in the whole world there are roughly 2000 living with Hunter Syndrome, three of them are girls.

In Ireland there are 9 boys and one girl that I am aware of, living with Hunter syndrome and in the UK there are roughly 52, living with Hunter syndrome.

So basically you’re telling me that the chances of you having another child with the same syndrome is fifty percent if he’s a boy, yet you had two more babies after Ethan was born! Wow, I don’t think I would have done that.

Well don’t hold back or hide your true feelings!

This kind of comment used to bother me but it doesn’t so much these days.

The chances of me having that defective gene to pass onto Ethan is really where this began. Genetics are fascinating.

My parents had more chance of winning the lotto than passing that gene to me.

It was just something that happened at the time of my conception.

Simple as that – the scary thing is, it can happen to anyone.

Had I been a boy, I would have had Hunter syndrome- yes having a boy with Hunters is rare having a girl with it is ultra rare. I carried that gene unknowingly all my life.

I would never have known either had it not been for Ethan.

Ethan was almost 6 when diagnosed, which means his brother was already running around like a hyper 4 year old.

Years went by and we thought our family was complete, two lovely boys.

Like many parents, we didn’t plan on our third but found ourselves looking down the barrel of a nine month wait to see how this baby would come into the world.

We got lucky.

But, we decided no matter what that our last son would get everything he needed if he were to have Hunter Syndrome, we knew the ropes by then and were very confident we would be able to get him into medical trails (we had tried this with Ethan but heartbreakingly he wasn’t a suitable candidate) which were ongoing in England at the time.

I am very happy to have three little boys and know how lucky I am to have them and I guess that’s what makes me different from those who ‘know damn well what they would or wouldn’t do’ in my situation.

But hey, they have a greater chance at winning the lotto than being in my situation!

The bottom line is – having a rare disease is not that rare and parents and those with rare disease like to talk about their journey, they encourage thoughtful questions, conversations around awareness and what life is really like being rare.

This year the campaign is all about #ShowYourRare – so please do that and use the hashtag.

Here’s my little Rare Ethan