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Hi my name is EthanMy families pride and joy!

ethan 1

I am special because I smile lots, have an amazing sense of humour and have hugs for everyone!I am also special because I have Angelman syndrome.I cannot talk, or hum or even babble, but to help people know what I want, I have learnt to lift my arms or bang my hand or chin.You guys are very clever at guessing what I want…

And you know what? I don’t mind that I am given the toast, when I would really have liked the yoghurt !

…and I’m kind of happy for you to dress me in the orange, instead of the blue !

But I get SOO frustrated at times.

You see sometimes I would like to stay in the lounge but mummy thinks it is time to take my nice warm nappy off, change my wet and soiled joggers, mop the floor,sit me in warm water and put bubbles in my hair!!!!  So what can a boy do when no words come out??!

I try flapping my arms in the air, or drop to the floor but they don’t understand svenskacasinon.

I try to sound Argh Argh Argh …But still they don’t understand.

I bite my arms, hit my head, lash out with the backs of my hands…even head butt the walls and floor.

I feel I will simply burst!

… AND who invented sleeping all night?

NOW THAT WAS JUST DAFT!!?!!

And you know what’s really weird?

I sometimes have funny red lumps that grow on my body. The doctors call them Haemangioma.

All I know is, they look like raspberries, bleed for days or even weeks and can stop me going places … but they are GREAT to pick at!

Great Ormand Street zapped 41 of them.

Now where’s the fun in that!

I also get wobbly at times. They say it’s epilepsy.

I have no warning when it will happen.

Sometimes I freeze first and get stuck like a statue, then I drop to the ground, lie on the floor and shake for a while.

Sometimes I don’t regain consciousness.

The doctors tell my mum this is Status epilepticus and it is life threatening.

ethan 9

That’s me – I am the one in white

 

This time I had seizures for ages! Day and night, from late summer till after Christmas.

But by then I didn’t wake properly

and I was half asleep for a whole month!

This time the doctors told my mum that the reason my legs stay bent now is because I had damaged my brain.

ethan 10  ethan 11

Mummy stays in hospital with me at these times. They make her a little bed up.

She organised Christmas from there, with presents bought online, which were wrapped by staff and friends from school.

Even father Christmas seemed to know I was there!

Apparently the rest of my family came to open presents with me… but I was far too busy dreaming!

(About the Teletubbies and Spice girls of course!)

Apparently it is a full time job looking after me?!!????***

I mean, doesn’t every guy want to eat the entire contents of the kitchen?

ethan 12

… and how was I suppose to know not to break the kitchen door?…

Or the cupboard locks which were there to keep me out?…

or that you’re not suppose to mix ketchup with yoghurt before

serving it on mum’s clean laundry ?*?!*!!*****

My mum says…

Thank goodness for Beaulieu House !

Beaulieu House is my respite centre.

· It is a fun place, where I get to have sleepovers with       friends (who to be honest are a bit like me!)

  • Beaulieu pick me up from school, take me out on their bus and cook me a yummy tea!
  • They have nice carers and nurses who know just how to look after me.
  • ·I can choose to explore in the sensory room, play out in the specially equipped playground, snuggle with others watching tv, or just chill in my own bedroom!
  • …And it’s a chance for my family to have some time off

I suppose have quite a big family

Mum tries to take us out together! But I can’t walk to the places they go and when I drop to the ground, they use that word ‘frustrating’ again!

ethan 13…and they all want a bit more of mum’s time, even the 3 grandchildren who have moved back home with me.Going to Beaulieu for a weekend gave them a chance to go to a water park. They were so happy to see me after their break!

ethan 14

Meet a couple of them….

Hello, I’m Lotte, Ethan’s funniest sister..I’ve been told that I’m not allowed to make him laugh too much anymore, as the last time I did, he got so excited flapping andsquealing, that he had a seizure! OOOPS!ethan 15

 

…And, I’m Ethan’s sister Tish!

I love my brother very much…

And I know he loves me just as much!

 ethan 16

I do have a lot of time for Ethan, although it can be very hard

living with him…

(especially having lots of uni work to do!)

I suppose I don’t live a normal life, living with a disabled brother.       Locking up almost anything which could be a hazard (yes even the bagels in the bread bin!).. You see we have had to resuscitate Ethan several times due to choking, so it’s always important that someone sits with Ethan during meal times (even for a slice of cake).

ethan 18

… But Ethan’s condition is so unpredictable, my family and I would often wake up to find the ambulance taking Ethan and my Mum away (sometimes over the whole of Christmas).. which was hard as we never knew whether he would come back..

But Ethan always seems to surprise us! And always comes back with a loving smile on his face, to his big family and all his friends at Beaulieu house.

ethan 19

Ethan needs two people to care for him, especially when he is wobbly on his feet, distressed and anxious or may have a seizure ..But most of the time Ethan only wants me .. (lucky me?”!)

ethan 20

That’s where Beaulieu house help, they give me precious time to spend with my family each week.

Ethan’s need for 24 hour care prevents us from doing lots, almost like prisoners within our own home. Even leaving Ethan unattended for 2 minutes to pop to the loo or answering the phone can result in all kinds of mischief (like finding he’s escaped out of the front door, or finding him drinking liquid from the loo brush holder! YUK)..

Since early childhood I had wondered what it would be like to go for a family holiday, where we could all just …

and not be on constant supervision.

Or perhaps have a meal out with Mum!

but hopefully with enough fundraising, everybody could look here

Beaulieu can offer a family like mine this type of support 🙂

 

So that is my family!

ethan 21 ethan 22

 

It seems we all have needs after all

 

I am Ethan

 ethan 23

I am extra special…

 

And I LOVE Beaulieu House

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