Ethan came to Beaulieu House for many years. His family wrote this touching explanation of his condition and how Beaulieu helped the whole family…

Ethan’s Story

Hi, my name is Ethan – my family’s pride and joy!

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 soooooooooooo 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?

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!

This Is Me…

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? And how was I supposed to know not to break the kitchen door? Or the cupboard locks which were there to keep me out, or that you’re not supposed 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.

This Is My Family…

…and they all want a bit more of mum’s time, even the three 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!

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 and squealing, that he had a seizure! OOOPS!

And, I’m Ethan’s sister Tish! I love my brother very much… and I know he loves me just as much! 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 — 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.

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 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!

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 two minutes to pop to the loo or answering the phone can result in all kinds of mischief.

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, Beaulieu can offer a family like mine this type of support.

So that is my family!