George meets Dave from the group James

Hi

Yesterday my friend George from Edinburgh went to meet my Uncle Dave. He is a drummer in the group James and has agreed to be a Patron of the Moebius Research Trust. They are on tour at the moment and because they were playing in Edinburgh George and his Daddy went to meet him.

Uncle Dave let George play his drums and gave him some drumsticks so he can play whenever he wants to. His mummy and Daddy might have to hold their ears when he practices!

Doesn't he look great in his glasses. George has Moebius Syndrome as well but it does not stop him having a great time.

Big hugs

Isaac x

What is it like?

My Mummy has asked me if she could write a bit in my blog and as she made me a yummy lunch I said she could:-

I recently received a card from a friend who also has a disabled son, more of this in a minute. It is very hard when you have a child that is experiencing problems and unless you have been through something similar with your own child it is not really possible to explain how isolating it can be. I am lucky that I live in an age where you can connect with others via the Internet, especially as Isaac's condition is so rare. I am sure people that know us get bored at times of hearing about Isaac's condition but sometimes it is all encompassing. Luckily Isaac's big brother keeps us firmly planted in the land of 'non moebius' life too!

About the card - in it my friend had enclosed a copy of some writing by another mother called Emily Perl Kingsley and she explains how it felt when she had her disabled child and it summed it up so perfectly I thought I would share it with you:-

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I hope this helps to explain a little of what it can feel like and so you can understand why we are trying so hard to raise money for Moebius Research. We don't want any other parent to find themselves in Holland, unless of course they are on holiday!

Love Isaac's Mummy x

Special People

Hi again
My Mummy says that when she is feeling sad it is often the little things people do that makes her feel happier and in the past few weeks there have been lots of nice things people have done or said. Here are some examples:-

On Thursday we had a special visitor, The Mayor of Mold. She said that she wanted to give me a teddy she had won and that when she got it, even though she does not know me, she wanted me to have it as I am a special little boy. I love that teddy.

When we went to meet Daddy for lunch we went to a farm shop called Rhug and had some lovely food. A lady there told Mummy that she thought I looked really happy and for some reason this made her cry. She wasn't sad though she was really happy because even though I can't smile a lady who doesn't know me said I looked really cheerful! Isn't that nice.

On Friday we went with our friend Gil to meet a man called Keith Austin. He used to be Mummy's boss (poor man) and he said that he will try to help us think of some ideas to raise money for the Moebius Research Trust as we really need to find out why I can't smile. He is a very kind man and I liked him lots.

There are so many examples of people's kindness that I just wanted to share a couple with you.

If you have any ideas on how we can raise funds for the Moebius Research Trust can you let us know please as we are hoping to help other people like me and also stop other Mummy and Daddies being sad when their babies are born. I know my family love me very much but they worry about me a lot and that is a shame.

Love Isaac x

A lovely Oz surprise

Hi
I had a lovely surprise in the post today because my Aunty Nicky sent me some books all the way from Australia. She sent them for my first birthday. Mummy says they show animals that they only have in that country, like Kangaroos and Koalas. They look really nice.

Aunty Nicky also put some money into my Just Giving website as did some of my friends from school. It is really kind of everyone to help. I have a very special lady coming to see me this afternoon..... come back later to find out who!
Have a lovely afternoon
Isaac x

James' new album straight in at number 10!

Hi
I am very excited because as some of you might know my uncle is Dave Baynton-Power, the drummer in the group James. They have just released a new album and it has gone straight in at number 10 in the charts. I am too young to know their other music but Mummy said it was really good. In fact it was my fault that her and Daddy didn't go to their concert earlier last year. She said I was due to come out of her tummy so it was not a good idea to go to it!

Dave has also agreed to be a Patron of the Moebius Research Trust, you can read about him on the Moebius website http://www.moebiusresearchtrust.org. It is great to have such a high profile trustee and we hope to tell you about another one soon too!

I have been a bit poorly this week and we went to see a Dr who said I have something called Asthma. He gave me some medicine but to take it Mummy has to put a mask on my face. I don't like it so I tell her by shouting lots and then I cry. Maybe that will stop her. I also was fed up with her trying to give me medicine last week so I threw it at her. That was funny. I like being one because I can shout lots and I have what Daddy says is called 'attitude'!

I am seeing my very nice speech therapist tomorrow called Sioned. She helps me with my eating because I still choke on food sometimes. I like my food and am sure it will get easier to eat it soon. Mummy sometimes gives me something called chocolate buttons but tells me not to tell my brother because he did not eat chocolate until he was much older. I like it when she shares this food with me and I don't choke on it.

Speak soon
Isaac x

A great day after a bad night

Hi
Last night I felt really poorly and kept everyone awake for a long time. I thought it would be great to refuse to take any medicine because I didn't like the taste! Mummy said it would make me feel better but I just didn't want to take that horrid stuff. We were very tired this morning!

Mummy and Daddy took me to see some lovely ladies at a place where we play with lots of toys and a lady makes lots of ticks in her book. This assessment was nice and the ladies said I was doing really well. There was a physiotherapist, a speech therapist and a child development specialist. Mummy and Daddy were really happy and even though I couldn't smile I let them know I was happy too by saying Ma ma ma ma for the very first time. Mummy cried because she said it was such a lovely thing for me to say. I might say it again soon.

Even though we have only been raising money for a very short time we have raised over £1000 already and lots of people have said they are doing things too help raise more. I am so happy people are being so kind.

Big big hugs to everyone for their help.
Love Isaac x

My Birthday!

It was a very special week because I had my very first Birthday! We went away camping and had a great time. On my birthday we all went on a special train, my first ever train journey and just for me the Sun came out all day. We even wore T Shirts!!!!

I have made so many special friends already this year and they are helping me with all my fundraising. The latest event to add to your calendar is a Salsa dance party to be held in Mold's Theatre Clwyd on the 14 June. For more information you can visit their website on http://www.salsa-inferno.co.uk/. If you are organising something to help us research this syndrome please let my Mummy know and she will put the details on this blog.

On Tuesday there should be an article in the Independent paper written by my Mummy. There have been lots of articles in the paper lately and we hope it will help people learn more about my condition so we can help other people like me.

Don't forget there is a big Motorbike ride across America in aid of Moebius Research Trust at the end of June and you can read all about their trip by visiting their website at http://www.kiltsacrossamerica.co.uk. Any businesses that would like to sponsor it can contact them or my Mummy.

Thanks for reading my blog.
Isaac (aged 1)