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Cardiofaciocutaneous syndrome

also listed as CFC syndrome

14 people found, showing 1 to 14

To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.

 

Derby City ( Derbyshire )

Apr 2011  male
Family type: not given
Siblings: 5
Disabled siblings: 0
Username: princessofde
Relationship: Mother
Other conditions: None

Last updated: 16 May 2015
Brief summary: My son is 4 AND DIAGNOSED CFC SYNDROME,PLZ FEEL FREE TO SEND ME A MESSAGE X

Dorset ( South West )

Feb 2009  female
Family type: two parent family
Siblings: 4
Disabled siblings: 1
Username: mummyp
Relationship: Mother
Other conditions: None

Last updated: 18 May 2015
Brief summary: hi I am mummy to a 6 year old little girl who has cfc would be happy to chat to other mums in similar situation

England

Oct 1994  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: handysandy
Relationship: Mother
Other conditions: None

Last updated: 15 Jan 2007
Brief summary: lauren was recently diagnosed with cfc after living with the noonans syndrome diagnosis for 5 years. we would love to be able to talk to other parents of cfc children.

Jun 1994  female
Family type: single parent family
Siblings: 3
Disabled siblings: 0
Username: Libby34
Relationship: Brother
Other conditions: None

Last updated: 24 Apr 2013
Brief summary: My sister is due to leave school very soon,there is no support, activities available for her needs or even available at all for special needs young people. Myself, her mum and carer are hoping to find a family willing to meet so the two can socialise.

Essex ( East of England Region )

Jul 2015  female
Family type: two parent family
Siblings: 3
Disabled siblings: 0
Username: mjh1982
Relationship: Mother
Other conditions: None

Last updated: 06 Nov 2016
Brief summary: Our beautiful daughter Bella was diagnosed with CFC Syndrome in May 2016. She also has Pulmonary valve stenosis and had open heart surgery in Nov 2015. We would love to chat with other families who have a child with CFC syndrome.

Sep 2013  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: sarahhudson
Relationship: Mother
Other conditions: None

Last updated: 18 Dec 2014
Brief summary: not given

Gloucestershire ( South West )

Feb 2010  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: connect2
Relationship: Mother
Other conditions: None

Last updated: 08 Dec 2012
Brief summary: Having just found out our son has CFC we have a long road to go to find out more. At the moment he is one happy little boy full of giggles.

Ireland (Republic of) ( Rest of Europe )

Jun 2006  female
Family type: two parent family
Siblings: 2
Disabled siblings: 0
Username: okerri
Relationship: Mother
Other conditions: None

Last updated: 21 Sep 2011
Brief summary: I am a mother of a little girl who is 5 years old. Last year she was diagnosed with CFC syndrome. I had never heard of this rare condition and would like to get in contact with parents of other children who have this disease. condition.

North West ( England )

Mar 1996  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: leylandjulia
Relationship: Mother
Other conditions: None

Last updated: 20 Jan 2017
Brief summary: Our 20 year old daughter has been recently diagnosed with CFC. We would very much like to hear from any families whose child has this condition but particularly any who have a very severe learning disability and complex epilepsy as the main manifestations

North Yorkshire ( Yorkshire and the Humber )

Nov 2009  female
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: Ava2009
Relationship: Female Family Member
Other conditions: None

Last updated: 17 Jun 2015
Brief summary: Ava has suspected CFC altough initial test of the regular genes have not clarified the diagnosis. She does have all the symptoms Heart defect Fluid on the Brain and Speach and Motor skills are behind others her age.

Norway ( Rest of Europe )

Aug 2005  female
Family type: two parent family
Siblings: 4
Disabled siblings: 1
Username: mamofMia
Relationship: Mother
Other conditions:
Noonan syndrome (56)

Last updated: 25 Nov 2006
Brief summary: My daughter has since she was born in august 2005 been crying and been in pain for many hours every day.And she has had severe feeding problems. Now the doctors think that she has cfc-syndrome.

West Riding of Yorkshire ( Yorkshire and the Humber )

Nov 2010  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: alfie2010
Relationship: Female Family Member
Other conditions: None

Last updated: 02 Mar 2014
Brief summary: my son has been diagnosed with cfc syndrome

Worcestershire ( West Midlands )

Jul 1992  male
Family type: two parent family
Siblings: 2
Disabled siblings: 0
Username: ebonyrosa
Relationship: Mother
Other conditions: None

Last updated: 20 Jun 2010
Brief summary: My son was born in 1992 but not diasgnosed with CFC until about 2006.He is a social and happy young man.

York ( North Yorkshire )

Oct 2004  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: mamfy74
Relationship: Mother
Other conditions: None

Last updated: 10 Nov 2006
Brief summary: my son is 2 and just diagnosed with CFC syndrome after suffering wih severe ftt, feeding difficulties and developmental delay. He's a happy, gorgeous little boy looking for a cfc friend.

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