Lob a bog!

Hi
We did the Town fete today and raised another £160! We sold jewellery people had donated and also a lob a bog! We got a toilet from the local hardware shop and made a sign then charged people £1 to throw toilet rolls into the toilet. If anyone scored 5 in they would win a fiver (luckily nobody did) People loved it and just the bog bit raised £55 with no cash outlay. We got some Tshirts with Isaac's picture on and made some bunting with laminated signs of Isaac's picture and the charity name. All in all it was a great success and more money in the pot - or should I say bog!!
A big thanks to Gil, Amy, Em and Gareth who came along and helped too as their help was invaluable.
Ceri (Isaac's Mummy)

Spot the Isaac!

Hi
This weekend has been so busy! Yesterday we went to a party and I went in a ball pool for the first time. It was great! Later today we are going to try to raise money for the Moebius Trust by going to the Mold town fete. My family and friends are going to sell some jewellery and tell people about my condition. I hope it doesn't rain!

Our friends from Scotland are now back from their travels across America, where they tried to raise lots of money. If you want to see a video about why they did the trip my Mummy has added it to this site. Just click below to watch it.

George's video clip

Have a lovely weekend and I will let you know how it goes at the town fete.
Love Isaac x

My Film Career!

Hi
I had a very exciting day today as Catja and Gregory from RTL Germany came to film me. They are going to do a film about Moebius for their news programme and asked if I could help them show what life with Moebius is like. It was great. They filmed me doing lots of things like playing, eating, going to the park and even having a bath! I made lots of mess and splashed everyone with water.

I am sure there are people with Moebius in Germany too so it will be nice if they get in touch and let me know how German Dr's help them to cope with it over there. My mummy says that the more we share information the better because some people might have found different or better ways of doing things.

I have put a picture of Gregory filming me and my Daddy on the see saw.
Have a nice weekend
Isaac x

My friends through the Moebius Research Trust

Hi
I am very lucky to have made lots of really lovely friends because of the forum on the Moebius Research Trust. When the Doctors said I had Moebius my mummy did lots of research on the computer and found this great site http://www.moebiusresearchtrust.org/. It has a place where people with Moebius, or have children like me who have the condition, can talk to each other. Mummy says it is really good for practical information.

At the moment two men are driving across America with skirts on (Mummy says they are kilts but they Lock like skirts to me!) to tell people about Moebius and to raise more money for research. You can see how they are doing through their website on http://www.kiltsacrossamerica.co.uk/.

One of my friends can sing really well (She is 2 and a half) and her Mummy made a video of her singing Happy Birthday. Do you want to watch it? You can see it at http://s329.photobucket.com/albums/l388/dawnies07/?action=view¤t=HAPPYBIRTHDAY.flv
Take care
Isaac xx

Thank you to Ella and Huw

Hi again!

Today we were given a lovely surprise by my big brother's friends. At the weekend Ella and her baby brother Huw were christened and instead of having lots of lovely presents they asked for donations to be made to my chosen charity the Moebius Research Trust. It was a very very lovely thing to do and they raised £350.

A big cuddle to Ella and Huw for being so kind.

Love Isaac xxx

A specialist centre for Moebius

Hi
My mummy has asked if she can say a little bit and so I thought I would let her - I hope you don't mind?

We are a step closer to getting a centre specialising in the treatment of Moebius. Imagine being able to go to one place and see all the consultants who have specialist knowledge of the treatment of Moebius.

If you are anything like me, when you found out your child had the condition (or your parent if you have it yourself) there started a hard slog to find who we should see or talk to. Very frustrating!

A multi disciplinary team is being put together and should be accessible to all but I need your help to ensure this happens. Could you please email me (enquiries@claritypa.co.uk) a supportive email just stating briefly:-
- who and how you or your child is affected,
- why it would help you or would have helped you had this service been available when you were young, and
- What area you live in.

Your replies will be dealt with in the strictest confidence. No matter where you live, if we had a central point where one team could specialise, they could share and learn from one another and who knows what they could achieve to help treat Moebius.

A massive thanks
Ceri