Browsing the archives for the fun tag

Announcing the first Costello syndrome golf day

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News, fun, fund raising

We are pleased to announce  the first golfing event to be held in aid of  The international Costello Syndrome Support Group (ICSSG)  The golf day will take place at  Churston Golf Club. We have interest of several local companies in the Torbay area and a number of companies have offered to give us Golf bag for the player who registers the lowest score, another prise is tickets for two people on Euro Star to France.

Thursday 26th August 2010
The first Tee off will be at 11:00am,  Teams will tee off at 10 minute intervals

Join us for a bacon sandwich tea or coffee before you tee off. Play to win the Costello Cup. We will be inviting the  winning team to return free in 2011 to defend the cup, Prize’s available on the course On return to the club house there will be a welcoming buffet followed by the Presentation of the coveted Costello Cup and other prizes.

All this  for just  £200.00 per team

If you would like to enter a team, or require more info please contact us using the form below.



Golf Day information Request
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  2. (valid email required)
 

cforms contact form by delicious:days

Posted by Admin on behalf of Paul Wilby Event Manager

Dancing revisited

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dance

A few weeks ago I posted a story about my daughter and her dancing success at Blackpool.  I have put together a short video of her in action, and having a a lot of fun.



Friends

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fun

Friends Forever, left to right the girls ages are 15, 8 and 6

One of the great joys of of any Costello syndrome conference is the opportunity for families and people with Costello Syndrome to see each other, chat and renew friendships.

Last week we went on holiday to Paignton. We had a great week, and were able to spend some time with some friends who like us have a child with CS. The sun shined on us. We were pleased to be joined by a 3rd family and we all spent a pleasant relaxing day together.

The best part of the day, and one that has created a lasting memory was to see these 3 young ladies playing and being together. They are truly friends for ever.

James meets Paula Dean

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fun

I surprised James (Hras + 6yr) and Brandon (big brother) with a trip to Miami to see Rachael Ray and Paula Dean. They were both speaking at the Jungle Island Food Network Event on Saturday. James is a huge fan of both.

I decided it was best to start preparing James the night before. He doesn’t’ always do well with surprises. The night before I told the boys that we were going to Jungle Island and that there might be some Food Network stars cooking. I asked who they would like to see most. Brandon said, “Rachael Ray” and to my surprise James said, “Paula Dean”. I guess God heard this, because that is exactly who he got to enjoy one on one. Paula Dean came up to him twice during the show. She rubbed on his head saying, “What cute curly hair you have. I wish I had your hair.”.

Another time she commented on the magazine he had of her which you can seeon the video below. Paula did cook a bit, but mainly joked and talked with the audience. One audience member asked her how she gets through difficult times. Paula then quoted the Serenity prayer word for word. I was impressed. Next we got to meet her at the book signing. This was great fun. James showed her his sign for her, “butter”. Paula loved it and they would laugh and do the sign together. Later that afternoon we had the Rachael Ray show. We got to be seated early, since James had disabilities. So, I told one of the stage men what a great fan James was and asked if he might be able to have a picture with her. He said he didn’t think so, because she had another engagement right after this one. And due to security, she would be staying behind the kitchen counter the whole time. This was a bit disappointing, but they did get great front row seats. I was so proud of Brandon. He had pictures of James watching Rachael Ray videos to show her.

Brandon raised his hand to tell Rachael Ray what a fan James was, but the pre screener guy turned him down because it wasn’t a question. So, he came up with a question and got to ask it (on video.) James stood up next to him during it, big smiles.

At the end, Brandon raced to try and catch Rachael Ray, but they ushered her through the back exit quick. Brandon was disappointed for James, but we realized it was Paula Dean he asked to meet the night before and that is what he got. Overall, we were blessed with great weather and great shows!

Here is a little video I made

[youtube]wRbXVPrgkF0[/youtube]

Carla

So Proud

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feelings

For many years my daughter has attended dance classes.  When she first started to learn to dance, not only was she tiny, she was wore Ankle Foot Orthosis. (AFO’s), and had problems walking let alone dancing.  A few people said we were bad parents putting her in a dance class where she would not be able to do what the other children were able to do.

Caring for a child with special needs is hard enough, dealing with the words of others is almost impossible.  So several years later, with dance exams passed, and medals won,  I am proud to present this short video of my daughter competing in her first dance competition. Just think if we had listened to all the people who said we were bad parents all those years ago, this moment would never have come. As for the future, if you are in Blackpool over the Easter weekend,  you may even see her dance in the competition final at the Winter gardens.

Taking Photos

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random ramblings

cath1

How hard can it be to take a good picture on demand. All though I consider myself to be quite a good snapper.

I am always armed with the trusty digital camera, just in case a good shot comes along. Sometimes it can be very very difficult to get the picture that looks just right.

We had a problem, my wife Cath needed a head and shoulder photograph for a press article. Simple enough, reach for the camera, snap, snap and snap again.

Unfortunately it was not that simple. All the photographs I took were poor and looked wrong.

The previous day my daughter Helaina had been taking some pictures.

cath-taken-by-helaina_stone-14This is the picture Helaina took.

That daughter of mine has a great eye for a good photo.

Guess which picture will be sent to the reporter?

Yes.. you guessed it will be the one Helaina took.