Isaac Hughes

Up and walking!

2009-09-17T11:39:00.000-07:00

Sorry it has been so long since I last put anything on here but I have been busy learning to walk! I decided I was a bit tired of always being the one crawling around when my friends could all walk. I love walking. I am still a bit wobbly but I am getting more confident every day.

Before the Summer my Mummy and her friend Louise had a clothes swap party and people were so kind and generous. Lots of shops in Mold gave things for a raffle and he has asked me if she can write it here and I thought I would let her.

Thank you to everyone who helps me and also who give money to help other children like me. The charity Moebius Research Trust now have over £50,000 raised and only need another £50,000 before they can hopefully start research and trying to find some answers.

Big hugs
Isaac.

Before the clothes swap event I sat down and thought about how it felt when Isaac was born and wrote the following. I was unable to explain properly on the evening as I was quite emotional having just met two parents of people with moebius for the very first time. I hope this gives you a little more insight.

I remember the first time he smiled at me, a big toothless grin followed by a chuckle. I was so surprised I nearly dropped him! He has lying on my knees whilst I did some work on the computer. I was so surprised I rang his daddy and told him. It was a moment I will always treasure.

I don’t have that memory with Isaac, only with his older brother. The memories I have from Isaac’s first months are filled with fear and worry. I remember like it was yesterday how we were woken every hour so they could stick a needle into his foot to measure his glucose levels and battle to give him a feed. I remember the terror of waiting for his genetic test results and the relief when they were negative. Most of all though I remember the day we were told we would never see him smile. The day we were introduced to Moebius Syndrome.

I can try and replace these memories with the first time he laughed, a strange animal type sound that made me wonder what he was doing, or the day he climbed up a step and I cried my eyes out with relief as this had been a long time coming. No matter how hard I try though the other memories overtake them and I wish they were different.

Jealousy is a terrible thing and I admit I am soooo filled with envy when I see friend’s babies smile at them or screw their faces up in delight at some wondrous experience. I want to tell them to treasure every smile and not take it for granted but they would not understand. You don’t miss something you have always had.

Isaac has his little smile of course. One side of his mouth curves up ever so slightly and a little dimple appears. I love that smile and as he gets older we can see it more. Every now and again his eyes have that naughty twinkle about them. Usually when he is about to take a plate from the cupboard and he is waiting for my stern ‘No’. His mouth twitches and he reaches for it anyway. These tiny expressions have to be carefully looked for and are never taken for granted. They are cherished and put away, carefully preserved to be brought out when we have a bad day.

A bad day with his big brother is usually a whining day. Constant moaning from the moment he wakes due to some unknown dream that has put him in a bad mood. A bad day with Isaac nearly always involves a third party. A ‘specialist’ (which does not really exist with this condition) saying something without thinking – too many examples to write here. With a syndrome as rare as this (only 200 people are thought to have the condition in the UK) the learning curve is slow. It took months before we realised that Isaac could not squint and that the sun hurt his eyes, and no one ever told us he might have problems with eating – it took several choking episodes and a frantic call to emergency services before we learned that one. Thankfully we have spoken to other parents now via the Moebius Research Trust Forum and their experiences have helped enormously. As has knowing we are not alone with this condition.

Isaac is two now and whilst he is not walking very well on his own yet he loves his special walking frame. He can run, stand up straight and look at things his friends can see. His favourite game is trying to walk down steps – not a good idea with a four wheeled walking aid behind you! He cannot say many words but he recently said ‘night night’ at bedtime so we look forward to more words following. We have tried to teach him some signs and his favourite is ‘food’. He signs it so often I am not sure if he wants food or is just delighted at being able to communicate. He will get very large indeed if I feed him each time he signs it!

We have moved on in so many ways from a year ago but the constant uncertainty is always with us. So few children have this condition it is hard to know what the ‘normal’ is and as such we just have to wait. His peers are certainly ahead of him but we have been told by other parents he will catch up. We have to hope that is true and try not to worry about the future. Not easy for any parent.

Thank you for taking the time to visit Isaac's blog.
Isaac's Mummy

Publicity and eye surgery!

2009-06-06T00:19:00.000-07:00

Hi
We have been a bit busy lately. Mummy is organising a Clothes Swap and Pamper evening with her friend Louise and to publicise it she has done a couple of interviews. Mummies friend works at the Chester Chronicle, Gil, and she wrote a lovely article about me. You can see it here. The Daily Post then used the article as well. Here is this article.

The day just got busier yesterday with Mummy doing two radio interviews, one for Marcher Sound and one for BBC Radio Wales. We really hope all the publicity encourages people to come to the Clothes Swap on 20 June at Glanrafon School. If anyone wants more information there is a website explaining it all.

On Tuesday I went into hospital for my second eye operation. Everyone was really nice and Mr Chandna the eye surgeon said it went well. My eyes are a bit red now but everyone says that they look much better. I will ask Mummy to put a picture on here when my eyes are not quite so red!
Big hugs to everyone
Isaac x

Clothes Swap and Pamper Evening

2009-05-15T04:59:00.000-07:00

Hi
My Mummy is currently organising a Clothes Swap and Pamper Evening to raise more money for Moebius Research Trust. Here are the details - I hope you can come (i will be in bed though!).

We are hosting a clothes swap and pamper evening in aid of Moebius Research Trust and North West Cancer Research Fund - so come along and swap your unwanted clothes for someone else’s and create a whole new wardrobe!

Saturday June 20th
Doors open 6.30pm (last entry 7.45pm) - 10pm
Ysgol Glanrafon, Mold
£7.50 in advance (£10 on door)

Inspirational guest speaker, Olivia Stefanino, will open the event. Prepare to be amazed as she demonstrates the power of the mind!

Please bring along at least one good quality item of clothing (accessories also welcome) by 7.45 pm at the latest.

Tickets can be purchased by emailing enquiries@claritypa.co.uk or calling Ceri on 07971 983028 or Louise on 07881 581871.

If you can't attend could you help by letting other people know about this event.
Many thanks
Isaac xx

Eye op latest!

2009-04-13T04:35:00.000-07:00

Hi
Sorry I have been quiet lately. Mummy had a call a couple of weeks ago to say they could operate the next day on my eyes! That was a big surprise but it was good because Mummy did not have so long to worry about me. I was asleep a lot of the time so I have told Mummy she can write on here.

The operation was really scary but we were pleased that his eye op was finally taking place. All went well with the anasthetic and intubation which was our main concern, as there have been reported complications with people who have Moebius. This part of the op was great and his anaethatist was lovely. She spent a lot of time explaining everything before the op. The op was not as it should have been however. His surgeon is wonderful but he got a little surprise when he looked at Isaac's eyes as the muscle that was over tight was already in the position he had been planning to move it to. This meant he could not do what he had planned and instead injected botox into the muscle to weaken it. This is only a short acting solution and over the next few weeks he will be monitored and the surgeon will the re-operate in 6 weeks (ish). He will use the information gathered over the new position, as his eyes move, so he can move the muscles and hopefully achieve straight eyes. Fingers crossed. So all in all we will be back to the hospital again and hopefully all will go well.

Isaac is still not walking but now he is two he is as feisty as any two year old but with the added frustration that he cannot walk yet. This is causing some problems, especially in nice weather. We want to be outside but activities are limited for those children of his age who cannot walk and then there is the problem with the sun and his inability to squint!!!! If anyone has any experiences of this and can offer a solution I would be very grateful. He refuses to wear sun glasses or hats so this is hard.

We have been putting eye drops in following his op (8 times a day in each eye) and the positives are that he has shown us he can close his eyes really tightly when he chooses.

Have a lovely Easter and we will give you some updates when we have them. Once again thank you for all your support.
Ceri & Isaac xxx

Delay disapointment!

2009-02-27T10:43:00.000-08:00

Hi
Today I had my eye operation cancelled. I was supposed to have it on Tuesday but unfortunately my surgeon's Daddy is poorly and so he has cancelled all his appointments for the next month. Mummy and Daddy are really disappointed as they said they were really nervous about my operation but they were excited too that I would soon have lovely straight eyes.

I don't know when it will be now as they are not going to even look at a new date until he is back at the end of March. It would have been nice to have straight eyes for my birthday in April but hopefully it can still be done before I start playgroup.

I am still enjoying my standing and walking and take a few more steps every day. I can crawl up to the top of the stairs in our house now. Mummy keeps the door shut so I can't go up on my own but as soon as someone opens it I crawl through so fast it is hard for them to stop me. Ha ha.
Take care and big hugs
Isaac xxx

With tiny steps....

2009-02-05T10:36:00.000-08:00

Hi
This week I surprised Mummy and Daddy by taking tiny steps. I decided I wanted to do this in my own time so have kept everyone waiting but now I feel ready to take some steps - only when I hold onto something of course! I especially like holding onto the bath and then walking to the other end and nocking toys into it. It is great fun.

Other tiny steps were made to reach our fundraising target. We still have a long way to go but it all helps and Glanrafon school in Mold kindly adopted the Moebius Research Trust as their charity last term and in such a short time raised £550! It was so kind of everyone. I went with my Mummy and Daddy to school to collect the cheque and met lots of the children who helped raise the money. It was lovely.

A big cuddle to everyone who has been helping to raise money for the research into why people like me can't smile.

It is only a couple of weeks until I have my eye operation to straighten my eyes. Mummy says I will still only see through one eye at a time but they will hopefully look much straighter. We are going to stay in holspital for a night so I can make some friends with the nice nurses and doctors. The doctor says I might need another operation after this one but hopefully it will be ok.

I hope you are enjoying the snow. I tasted some for the first time yesterday - it was lovely and cold. A nice surprise.
Big hugs
Isaac

My new bike

2009-01-19T08:24:00.000-08:00

Hi
For Christmas I got a lovely new bike that my Mummy or Daddy can push me in until I am big enough to ride it on my own. I like going riding on my bike with my big brother. He also has a bike but he can ride his all on his own.
On Sunday we went to the park and took my brother's class monkey, Meic, who was staying with us for the weekend!
I hope you are all ok.
Love Isaac
xxx

Happy Christmas and a Happy New Year!

2008-12-28T04:14:00.001-08:00

It has been a year since my Mummy and Daddy were told I had Moebius Syndrome and My Mummy has asked if she can write in my blog so as it was Christmas I thought I would let her.

During the last twelve month's we have learned more than we ever wanted about a rare condition. We have spoken to many consultants and Doctors and have had to become mini experts so much so that the consultants often ask us for our opinion! We would love to meet a Consultant who knows about the condition as a whole but unfortunately it is a complex syndrome that involves lots of people who are experts in their bit. Who knows maybe in 2009 we can help establish a centre of excellence that will allow us to see the whole picture and consultants will have seen more than one or two people previously which would give them a knowledge base to draw upon.

12 month's on and Isaac is still unable to give us a toothy grin. He has his tiny 'smile' that gives him dimples on one side of his face and considering how little his eyes can move has a mischievous look that can bring a tear to your eye. Isaac is now able to show his emotions in other ways. Only this morning he reached out to give me a cuddle and moments like that are priceless. He also has developed a love for pulling hair which is not always wanted at 2am! He could not sleep the other night and so we brought him into bed but instead he just kept crawling on top of me and giggling whilst he pulled my hair.

Christmas passed him by and it took several days to open his presents. I think next year might make more of an impact. He loved his presents but just wanted to eat the wrapping paper!

The first few month's of 2009 are already busy with lots of scheduled appointments and on March 3rd Isaac will have his eye operation to straighten his eyes. A date to look forward to with excitement and dread in equal measures.

The kindness people have shown during the past year has been lovely and just a few of the highlights include a beautiful Carrol service held by the Mold lodge who raised over £200. A local village, Cilcain, have been lovely and supportive over the past year as have Glanrafon School who kindly raised money for the Trust over the last term. Kindness has been shown by so many people and we are very grateful to everyone for their help both in terms of support and fundraising.

A photographer, Sebastian, recently visited the local Jo Jingles group we go to and to be honest I found the experience quite hard as Isaac is not always the most photogenic because of the lack of expression. It is also hard to see the cheeky grins on the other children and know that that moment is forever captured. Sebastian was great and the photos he produced captured Isaac beautifully. One of his photos is above. When Sebastian found out about Isaac's condition he kindly gave the photo's as a Christmas gift so I can use them as thank you cards. If you want to learn more about his photography you can visit his site at www.stellaphotography.co.uk.

Wishing you all a wonderful New Year and big cuddles off Isaac.
Ceri xxx

Music time

2008-11-29T00:18:00.000-08:00

Hi I really like my music. When my brother sings I sometimes bounce up and down - Mummy and Daddy say I am dancing but I just like to wiggle! I like making my own music too, the louder the better. Mummy took a video of me the other day playing my first concerto - in c minor I think. I hope you like it. Lots of Love Isaac xxx

A busy month!

2008-11-15T08:33:00.000-08:00

Hi
Sorry it has been a while since I last wrote but my Mummy has kept me very busy!

My standing frame - Because I am such a clever little boy my physio, Theresa, said I don't need this any more and so it has gone back to the hospital. Mummy and Daddy were very happy that it has gone. I still don't feel like walking but I have shown them that I can put one foot in front of another and walk a bit when Mummy holds me up. They seem quite pleased when I do this. Parents are very easily pleased sometimes!!!

My holiday - Theo did not have school for a week and so we went to Belgium to see my cousins, Tim, Sam and William. We had a lovely time and me and Theo loved seeing everyone. After a couple of days there we went to Holland to a centerparcs. It was great. We had a chalet on the river and we could watch and feed ducks from the patio. We went swimming lots and lots and my big brother went on the rapids. Mummy did not like it because she said they were a bit scary and I was too little. I loved the water because there was not much smelly stuff in it (chlorine) and so it did not hurt my eyes at all when I splashed about. I love splashing about. When I have a bath I get the whole floor really wet and my big brother sometimes says he does not want a bath with me because I keep splashing him. ha ha.

Nursery - Now I am a big boy I go to nursery one day a week. Mummy says she misses me lots but I have a great time. Last week I went all day and did lots of playing with my new friends and even painted (it tasted yummy). The girls who look after me are lovely and make sure I have a nice time.

Fundraising - Lots of people have continued to be kind and have helped raise money for the Moebius Research Trust. My brother's school have been doing some fundraising and have raised over £260 so far and a pub in Mold called the Dolphin have now raised £500. This is really kind of them and it is very exciting that so many people want to help.

Research - There are now 90 people on the database who have agreed to have their blood tested for the DNA research and Dionne at the Moebius Research Trust said that we are going to start it very soon. They still need lots of money to pay for the ongoing research but it will be very good to know it can start. There has been over £40,000 raised so far.

If you can help with the fundraising or want to know anything else about Moebius please let my Mummy know by emailing her at ceridwenhughes@hotmail.co.uk.

Big hugs
Isaac x

On the move!

2008-10-19T12:31:00.000-07:00

Hi I am really enjoying crawling now and often escape from the lounge into the dining room and if I am really lucky can make it as far as the hall before anyone notices! My favourite game is to crawl on top of my big brother. He enjoys that too and we both laugh a lot. My Mummy took a video of it and so she has put it on the blog to show you. I can go really fast when I want to. Big hug to everyone. Isaac xxxx

Standing on my own - Yipee!!!!

2008-09-18T11:02:00.001-07:00

Hi I have decided (much to my Mummy's relief) that I do like standing on my own feet after all. Last week I stood on my feet for the first time and now I like standing lots. For some reason Mummy thought this was very exciting. I might even take a few steps one day! Big hugs Isaacxxx

My friend's sonsored walk

2008-08-29T11:06:00.000-07:00

Hi
My very lovely friend Erin (you can see her lovely smile in the picture above)has Moebius Syndrome just like me. Our Mummies met on the Moebius Research Trust forum and they often chat and swap ideas. Erin's Mummy, Dawn, and her relatives are planning to do a sponsored walk to help raise money to fund research.

Here is what her Mummy says about the walk:-
'This charity is very dear to my heart as my beautiful 3 year old daughter Erin has Moebius Syndrome. We are doing all we can to raise the money needed to find the cause of this syndrome that robs so many children and adults of the ability to smile or indeed show any facial expression. Also they are unable to move their eyes from side to side.

It has so far proved very difficult to raise the money needed as the syndrome is so unheard of and I know of only 2 other people in Northern Ireland with this syndrome. So we are gathering together some close friends and relatives who are unbelievably unfit I might add, (lol) to do a 10mile walk to help raise funds. We intend to start off at Holywood....walk to Helens Bay and then back to Holywood again.

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Moebius Research Trust gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation. We are also printing up sponsor sheets as well so please contact me if you would like one....

So please please sponsor me now!

"OUR SMILE IS IN OUR HEARTS"
Dawn'

To sponsor Dawn please visit her site at www.justgiving.com/dawnies
Thanks
Isaac xxx

My standing frame!

2008-08-17T11:10:00.000-07:00

Hi It has been a while since my last message because we went away in the caravan for three weeks. It was really great and I made lots of lovely friends. Last month the physio brought me a new standing frame to try. She said it would help me want to stand a bit. I told her I was quite happy just rolling around but she seems to think I should want to stand! I really like it surprisingly and you can see it in the photo above. The best game is to throw the little tub at my Daddy and brother. They think it is fun but not as much fun as I do. I have attached a small video clip of me laughing at them as I throw the bowl. Me throwing my bowl, standing in my frame.

Big hugs
Isaac xx

Lob a bog!

2008-07-20T08:20:00.000-07:00

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!

2008-07-20T00:06:00.000-07:00

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!

2008-07-11T10:17:00.001-07:00

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

2008-07-08T06:34:00.000-07:00

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

2008-07-07T09:00:00.001-07:00

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

2008-07-07T08:53:00.000-07:00

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

Toddle waddle!

2008-06-25T11:50:00.000-07:00

Hi
You might be asking what is a toddle waddle - well it is lots of lovely babies and toddlers walking, crawling or being pushed around a field. Why are they doing this? To raise even more money to help us pay for some research.

While we were on holiday there was a 'Toddle Waddle' at my big brother's old nursery, Buttercups in Mold. Lots of people sponsored them and they have raised over £400! Isn't that great.

My Mummy says that when I can walk I can try to raise some money like this. I don't really want to walk at the moment - I prefer to sit and play or roll around the floor. I get to where I want to go and am happy. Mummy says the physio lady is not happy but I don't care. I will do it when I want to. Mummy bought me a bouncy thing today. She says she hopes it will make me want to stand a bit more and use my legs. I like bouncing and had a good time in it but I think I still prefer rolling on the floor!

I will ask Mummy to take a photo of me bouncing. When I bounce I get very excited and kick my little legs around. Mummy says I have smiley feet. She says that when I am happy I wiggle my feet. Do you have smiley feet?

Love Isaac x

Salsa Charity Event

2008-06-16T05:45:00.000-07:00

Hi
On Saturday night, when I was tucked up in bed, there was a Salsa party at Theatre Clwyd in Mold organised by Don Stephens. It was his birthday party and he kindly arranged it so that all donations on the evening went to the charity I am supporting, the Moebius Research Trust.

Just during that one evening they raised £1232.50 for the charity! My Mummy and daddy have asked me to thank everyone for their fantastic contributions with a big special thanks to Don, Gil Lightfoot and Keith Austin.

You can find out more about Don's salsa classes at www.salsa-inferno.co.uk.

Many many thanks
Isaac x

An Italian Holiday!

2008-06-15T10:53:00.000-07:00

Sorry I have not put anything up for a while but we were away in lovely Italy for two weeks. we stayed on a campsite called Union Lido near Venice and it was really nice. I went on a plane for the first time, went to the beach and tasted my first sand!!!! It was lovely. I liked it so much Mummy had to keep me off the sand because I tried to eat it so much.

We went to Venice and had a boat ride on the Grand Canal and I saw lots of lovely boats and even a fire engine boat which went really fast. During the holiday I also ate my first ice cream and really enjoyed it. I liked vanilla but my big brother liked the chocolate mint one.

We went swimming a lot so I have put a picture on the site to show me having a nice time in the water. I had to wear my sunglasses because it was so sunny. It was lovely to be in the hot weather but I found the sun very bright and so had to keep my eyes covered.

Mummy made me some lovely pasta when we were there and I tried some new textures. Because I am not very good at eating some foods Mummy only gives me little bits until she is happy I can manage it ok. I tasted white bread for the first time and I realy liked it, especially when it had jam on it!

I hope you have had a nice time while I was away.

Love Isaac x

Clean teeth!

2008-05-23T10:29:00.000-07:00

Thank you to everyone for all the lovely messages after The Independent article. It was really nice to hear about you and your families. I have been very busy lately and have been having a nice time in all this hot weather. I found the sun a bit bright for my eyes but Mummy tried to help by taking me to get some special glasses fitted. I hope they will be ready soon because they looked very smart and when it is sunny they will go darker and help my eyes.

Now that I have a few teeth Mummy bought me my first tooth brush and I love cleaning them - well I really like chewing on the brush! I have also decided which is my favourite teddy. Daddy say it is a tiger. I love it and when you cuddle it's foot it snores like I do when I sleep. I love it lots and give it lots of cuddles.

Mummy has put some pictures on here for you to see. I hope you like them.

Love Isaac

xxx

A busy time

2008-05-12T23:12:00.000-07:00

Hi again

I have been having a very busy time lately! I had my first hair cut which is great because my Mummy says I don't look like someone from the 1970's with a comb over now!!! My Mummy has also written an article for The Independent newspaper so if you would like to read more about me and my condition it is in the paper today (Tuesday).

I went to meet a plastic surgeon at Alder Hey on Friday. It was a very very hot day and so I was sick on Mummy when we were at the hospital. I was ok but Mummy smelt a bit yucky. The plastic surgeon was very nice but there is not very much he can do to help me smile. There is smile surgery if I need it when I am a lot older but that is a very very big operation and it might no make much difference as they move one muscle from your leg or chest and it can never do all the work 40 muscles usually do. I also saw the eye surgeon Mr Chandna. He says he will operate on my eyes in about a year and hopefully make my eyes a bit less winky wonky.

People are trying really hard to raise some money so that we can do some research into Moebius because no one knows why it happens. We only need another £15,000 to get the research under way. It would be so exciting to try to find out why this happens so no other Mummy and Daddy have to learn that they will never see their child smile. If you can help can you contact my Mummy please on ceridwenhughes@homail.co.uk.

I will put a picture on here soon showing my lovely new hair cut.
Big hugs
Isaac x

George meets Dave from the group James

2008-04-25T00:50:00.000-07:00

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?

2008-04-23T09:16:00.000-07:00

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

2008-04-21T10:26:00.000-07:00

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

2008-04-16T05:29:00.000-07:00

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!

2008-04-13T12:31:00.000-07:00

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

2008-04-09T13:45:00.000-07:00

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!

2008-04-06T12:56:00.000-07:00

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)

More publicity!

2008-03-28T04:14:00.001-07:00

Hi
It was lovely to see such nice articles in the Flintshire and Cheshire Chronicles. I hope you like my blog and if you want to send me any messages you can email my mummy on enquiries@claritypa.co.uk or post them on this site. It would be nice to see if you have any fundraising ideas or just want to say hi!

On Monday night my Mummy and her friends are having a meeting to talk about an auction they are planning. I think I will be in bed because it is past my bedtime (unless my teeth keep me awake again - I have 5 now and 4 of them arrived just this week!). If you have any ideas for auction items or can donate something it would be great. We have not got a date yet but hope it will be soon, maybe you will be able to come along and support it.

Love Isaac xxx

A quiet day!

2008-03-25T04:51:00.000-07:00

Hi
It was such a busy weekend, I am having a quiet day playing trains with my brother. Even on quiet days my friends are busy raising money for the MRT. My friend Gil just rang and said a kind lady in her office (also called Gill) has baked a yummy chocolate cake and sold it around the office for £40! It must be a scrummy yummy cake.

Just over the last few days we have raised £290 - isn't that great. I am lucky to have so many kind friends who are trying to help me.

I am going to have some lunch now.

Bye for now
Isaac xx

Welcome

2008-03-23T10:43:00.000-07:00

Hi
This is my first post on this blog. My Mummy thought that after so many people kindly contacted us after the many articles that have recently appeared she would make me a blog so my friends can see what I am up to.

Me and my family have joined with other families to try to raise £250,000 to fund vital research into why I, and others, have Moebius Syndrome. There are so few people with it that no one funds any research and I would like to see why I can't smile or blink my eyes. There is no cure but who knows what could happen if the research goes ahead.

There is a nice geneticist man in Edinburgh who is all ready to start on the research but it is expensive and so we are going to try to raise lots of money. My family have personally decided to try to raise £20,000 towards the fund. If you can help can you contact my Mummy via this site please.

This weekend was a very busy weekend. On Saturday we went to a small village called Cilcain where the local Chapel held a lunch and donated all their proceeds to the Moebius Research Trust (MRT). They raise £100 which was really great. We met some lovely people and I really enjoyed my cuddles from some of the lovely ladies.

On Sunday we went to visit my Mummy's friend Gil and her family. Her daughter Amy had raised over £100 at school for the MRT. It is so kind of people to help me like this.

I am a bit grumpy at the moment because I have some more teeth coming through now. Mummy says I have nearly 3 now! They are a bit ouchy. I am going to have a bath because I like to kick around and splash lots.

Thank you for reading my blog.
Isaac x