Was this in the plan???? Written by Stephanie Nimmo in London

and

Ourprincessnicola Written by Jo Burns in Australia

Still here – GO read already

Our Web forum went missing of the web for a couple of days and the FAQ system came, then went, and is now back again, all to do with the black arts that is the DNS system that makes the web work. All being well everything will be fixed in the next few days and normal service will be resumed.

Well everything was going well  until the server went an rebooted and never recovered. So if people are looking for the RASopathy network for the next day or two it temporary broken. A new server is rushing this way,  hurried along from Amazon  by a tribe of lost of bits and bytes, and all being well will be up and running by the weekend.

In the mean time enjoy visiting this site, while I debate on whether it will be a fun project to build a new CostelloKids website in Drupal, or a WordPress platform.

If you can see yourself to making a donation to help us cover the costs of this site then that would be amazing.

When my daughter was 16 we held a huge party for our family  and friends. It was great we built memories to remember, and every body was able to join with us to celebrate a birthday that we thought we would never see. The Hotel were fantastic at the time catering for our needs, and nothing was too much trouble as they wanted to give Helaina a wonderful time.

After the event we made plans to hold another big party to celebrate her 18th birthday and in February 2011 we signed a contract to host her 18th fully expecting to be treated in the same way we had previously been treated. Oh how wrong we were, on Sunday  January 8th we were invited to discuss the venue, or so we thought. However the hotel had invited us to see the manager because they wanted to tell us that they were cancelling our event. Not only that the staff did not have the courtesy  or manners to even recognise or address Helaina, she was just ignored. The event was cancelled by them outside of the terms and conditions of the contract and we had no say in the matter.  The Bower Hotels behaviour left us devastated.

The local paper has covered the story here Heartbreak hotel for Helaina  

If you are thinking of holding your event at this hotel think again – if they can treat a person with a life limiting condition in this appealing way, how would they treat you on your special day.

In the next 2-3 months I will be Archiving the content at costellokids.com and integrating within a new wordpress site the current news and FAQ sites. And at the same time developing the new site.

CostelloKids was  first launched way back in 1996 less then a year after my daughter was first diagnosed with this rare condition, since then a huge amount has been learned, we have made many good friends and met lots of interesting people along our journey of understanding. I welcome comments and ideas a to how to develop the future of CostelloKids on the web.

Dr Kerr presents the chair discussion and answers questions at the October 2011 UK costello & CFC syndrome UK meeting

In order to protect the copyright and images of individuals, the powerpoint presentations have not been included in this video.

Managing Dental issues presented by Kay Hood. This presentation was made at the at the 2011 UK Costello & CFC conference October 2011.

In order to protect the copyright and images of individuals, the powerpoint presentations have not been included in this video.

Managing poor feeding presented by Rebecca Howarth. This presentation was made at the at the 2011 UK Costello & CFC conference October 2011.

In order to protect the copyright and images of individuals, the powerpoint presentations have not been included in this video.

Clinical features of CFC and CS, and other RASopathies. presented by Dr Emma Burkitt-Wright,  This presentation was made at the  at the 2011 UK Costello & CFC conference October 2011.

If you have not booked yet, it is not too late, although the on-line booking form on the information page is no longer valid. Please use the form below to contact me, and I will send you the relevant information.  Discount room rates should still apply.

If you are travelling with younger children it would be a big help if you could bring some favourite toys or pastimes, we have limited child care and by having something your child knows and loves will help us to support your child’s play interests .

Please bring a prize or two for our raffle, we would like to have a conference in the UK every year, the costs are high and funds are low, so we count on the raffle to help raise a little finding for the future.  The event next week will cost a good few thousand pounds, so every penny counts.

On the Wednesday we plan to start a registration event at 4pm. This will be a time to relax, have a coffee, and make new friends. Evening buffet will be from 6pm.

The family day out depends on the weather.  Gulliver’s Land is the first choice.  The cost is £11.25 per person. Gulliver’s land have offered us 1 free adult place with every child place, so it will not be too expensive.

If it is raining the plan will be to have an afternoon bowling.

Transport to whichever we choose will be by car, and we ask families who have free space to help by car sharing.

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