Supporting people with Cri du Chat Syndrome and their families

Latest News


Thanks to Phil Cox

by Lucy Santos on 04 January 2017

A big thanks to Phil Cox who has donated the profits of sales of his book, Point North and Pedal, to us. A fascinating read, this book tells the story of Phil achieving his life ambition - a solo cycle from Land’s End to John O’Groats - and is well...

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Pepi's Story

by Lucy Santos on 04 January 2017

Pepi’s mother writes:  Pepi was a long awaited child. In 2009, as soon as I fell pregnant, I put him on a waiting list for a nursery that was considered the best in the country. I remembered vividly all terrible places of my childhood and fell in love with Oakfield....

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Lankykats

by Lucy Santos on 12 December 2016

A huge thank you to Lankykats for their latest donation to the work of the support group. We are so thankful for their fundraising efforts and wish them a very happy New Year. You can find out more about them on their website http://www.lankykats.com/

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Two research projects need your help!

by James Smith on 26 September 2016

More scientific research into Cri du Chat Syndrome is always a good thing, to help our families and all those in the future. So, we’re excited to tell you about not one but two new research projects that need your help! ImagineID First up is ImagineID, a study being carried...

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Alfie's Story

by Gemma M on 04 August 2016

Alfie was born on July the 26th 2014. The pregnancy and birth was normal and Alfie was a healthy weight of 7lb 7oz. Alfie did not take to feeding well at all we were in hospital for 5 day to try get Alfie to feed during this time a nurse...

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Debbie's Story

by Gill Beazley on 04 August 2016

My sister, Debbie, was born in 1963, the year Cri du Chat was discovered, the fourth daughter to Jack and Margaret Beazley. She was diagnosed when she was aged 3 by Dr Penrose at Harperbury Hospital, St Albans and she was the 27th known case in the world. She had...

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Research: Non-compliance in children

by Caspar Hull on 12 April 2016

Dr Kate Woodcock from Queen’s University Belfast would like your help with her research into non-compliant behaviour in children: The project is directed by Dr Kate Woodcock (lecturer in atypical development) and her post graduate research student Katherine Grady at the School of Psychology, Queen’s University Belfast. They would like...

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Harry's Fund supporting families with Cri du Chat Syndrome

by Lucy Santos on 07 September 2015

We are delighted that we have been the recipient of a donation from Harry’s Fund. Harry’s Fund is a charity set up by the family of Harry Bates, who was born on the 11th February 2008 and at the age of 12 weeks was diagnosed with Cri du Chat syndrome....

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Changing Membership

by Lucy Santos on 03 July 2015

You may remember that a while ago, we asked for your thoughts on how the CdC Syndrome Support Group operates. We wanted to understand how we could best secure our future, help as many families as possible, and provide a welcoming community for parents, carers, friends and family of people...

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Volunteer Committee Members Wanted

by Lucy Santos on 23 April 2015

The Cri du Chat Syndrome Support Group is managed by a committee and we are currently looking for new members to join us. We are urgently looking for replacements to step into both the Chair and Treasurer roles at the end of the current term and in addition require more...

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The Matias Mansion

by Damian Haywood on 04 March 2015

##House Adaptations The extension, or “Matias Mansion” as we like to call it, has finally been completed. It has been a long hard slog of four years, but it has been well worth it. We were very fortunate in Oxford, the council provides an interest free loan in addition to...

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South West Meet Up

by Sarah Owen on 04 March 2015

A Review The South West meet up was held in Cardiff on 7th February 2015. This was the first event in this area, the first event we had attended, and the first we organised! We are mummy and daddy to 18 month old Morgan and we had many emotions from...

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Meetups Everywhere In 2015

by James Smith on 04 February 2015

We’re always thinking long and hard about the mission of the Support Group; how we can best help parents, carers, relatives and friends of those with Cri du Chat Syndrome. In particular, we’re always trying to work out how can we help the most people. With that in mind, and...

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South East Meetup

by Amanda Smith on 31 January 2015

On Sunday 18th January 2015, 11 families from the South East met up in Horsham for a regional gathering of our CDCS friends. It was great to meet lots of new families who joined us for the first time, and finally meet other kids with Cri du Chat.  We...

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Lankykats supporting families affected by Cri du Chat Syndrome

by Lucy Santos on 19 January 2015

We are delighted to be one of the Lankykats chosen charities for 2014 and 2015. Formed by Lancastrian musicians Lankykats Rock ‘n Roll Kollective was launched by volunteers in 2011. The Cri du Chat Syndrome Support group relies on donations and the fundraising efforts of our supporters and we are...

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Cicely's Story

by Caspar Hull on 03 December 2014

Transition trials and tribulations Cicely turned 18 in October and with that she is now an adult, and as such passes from children services to adult. Transition!!! Cicely has been a ‘looked after person’ since the age of 12, living in a lovely residential home – Haresfield - a few...

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Holly's Story

by Jenny Sorbie on 04 November 2014

Split school placement provides Holly with the best of both worlds Our daughter Holly has CDC and attends a split mainstream/special school placement in Scotland. Holly’s main education setting is a fantastic special school for children with complex needs. Children who attend will have a severe to profound learning disability...

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Starting School - One Family's Decision

by Sarah Brooks on 04 September 2014

It feels like it’s been a long road to get to this point, yet at the same time I cannot believe my daughter is going off to school. Surely I…I mean she…can’t be old enough….Those days in the hospital when she was first born seem like only yesterday, yet tonight...

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Survey - The Way Forward

by Lucy Santos on 16 June 2014

The Cri du Chat Syndrome Support Group is guided by the requirements of our members and the wider medical and social community. We’d like to ask you for a little of your time to help us; by answering our short questionnaire (approximately 10 minutes) you will be helping our committee...

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CdCSSG Grants: Maddie's Car Seat

by Lianne Thayre on 27 May 2014

Back in January of this year, it was decided by our physiotherapist that from a physio point of view Maddie’s baby car seat was no longer good for her posture. Also being that she is so small she was nowhere near heavy enough for the next size car seat. Our...

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Our Story: The Sparkes Family

by Jamie Sparkes on 26 April 2014

Hello, we are Jamie and Amy Sparkes. We have a son called Harry who is now 5 years old (born 2008) and a daughter called Poppy who is now 16 months old (born 2012) and we live in Liverpool. Diagnosis In January 2012 we found out that we were expecting...

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Family Weekend 2014

by Lucy Santos on 12 April 2014

We’re excited to announce that this years’ family weekend will be held at Chessington World of Adventures, just south of London, on 27-29 June. Speakers and workshops will be confirmed soon, but it’s shaping up to be a great event! For booking details and prices, take a look at the...

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Rare Disease Day 2014

by James Smith on 13 February 2014

February 28, 2014 is Rare Disease Day, and international effort to raise awareness of the many rare conditions that affect millions of people, including Cri du Chat Syndrome. Take a look at the Rare Disease Day website and Facebook page for more details, including how you can take part. They've...

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International CdC Awareness Week 2014

by James Smith on 24 January 2014

May 4 - 10, 2014 The USA's 5p- society have launched a new website for International Cri du Chat Awareness Week 2014. They've also made a rather nice video to promote it, which you can watch at the bottom of the page. Why not see if you can raise some...

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Southeast CDC Meetup

by Amanda Smith on 24 October 2013

On Saturday 19th October, 10 families spanning 7 counties met up in Horsham for the first meet up in this area. Half the families were support group regulars, while the other half had never been to a meet up like this before. Here is what we got up to… We...

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Welcome to our new site!

by James Smith on 05 May 2013

As you may have noticed, we’ve given the website a bit of an overhaul. In fact, it’s been completely rebuilt from the ground up to give you a better experience all round. So, what’s changed and why? Simpler: We’ve tried to make it easier to browse to the information you...

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CdC Awareness Week Badge

by Lucy Santos on 25 April 2013

This badge can be downloaded and saved to your computer. Use as an avatar on your social media profiles or as part of your pledge to support CdC Awareness day.

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Cerebra Update

by Caspar Hull on 04 April 2013

This is an update from the Cerebra Centre for Neurodevelopmental Disorders about their ongoing work on CdC and similar syndromes. From research to practice: building accessible online resources for families and professionals. The Cerebra Centre for Neurodevelopmental Disorders (CNDD) opened at the University of Birmingham in 2008. Prof. Chris Oliver,...

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CdC Day 2013 - The Pledge

by Lucy Santos on 04 April 2013

In the run up to Cri du Chat Awareness Week, to be held in May 2013, our families, friends and supporters are invited to become Ambassadors and to take a pledge. The CdC Awareness Week 2013 Pledge is a commitment to undertake as many of our simple ideas as possible...

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What is CdC Awareness Week?

by Lucy Santos on 29 March 2013

Cri du Chat Awareness Week is to raise awareness of this rare syndrome and to help support families with a child or adult with Cri du Chat syndrome. We have found the best way to do this is through word of mouth and stories from families about their own experience....

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