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Cornelia De Lange Syndrome thumbnail of directory

also listed as Status Degenerativus Typus Amstelodamensis,Amsterdam Dwarfism,Brachman de Lange,Status Degenerativus Typus Amstelodamensis,De Lange I Syndrome

12 people found, showing 1 to 12

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

 

Cheshire East ( North West )

Feb 2005  male
Family type: two parent family
Siblings: 4
Disabled siblings: 0
Username: alexandra
Relationship: Mother
Other conditions: None

Last updated: 08 Mar 2008
Brief summary: Hi, my 3 year old son is moderately affected with cdls. He is currently tube fed paediasire and has a lot of reflux but despite this he is growing really well! I would love to hear from anyone with a cdls child as we seem to be few and far between!!!

Apr 1998  female
Family type: not given
Siblings: 3
Disabled siblings: 0
Username: sofismum
Relationship: Mother
Other conditions: None

Last updated: 08 Mar 2008
Brief summary: sofi has cornelia de lange syndrome.

Denbighshire / Sir Ddinbych ( Wales / Cymru )

Sep 2005  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: CdLSmum
Relationship: Mother
Other conditions: None

Last updated: 20 Jun 2007
Brief summary: Daniel was diagnosed as being classically affected with CdLS was born 2nd september he is fed by gastrostomy and wont take anything by mouth he has alot of the syndromes symptoms but has both arms and no heart defects

England

Mar 1999  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: danielsmum29
Relationship: Mother
Other conditions: None

Last updated: 04 Jul 2007
Brief summary: Mum to 8 year old boy who has Cornelia de lange syndrome, complex congenital heart disease, autistic spectrum disorder and severe SLT disorders and plenty more! My lad goes to a moderate - severe SN school.

Mar 2006  female
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: pochiluv
Relationship: Mother
Last updated: 14 Jul 2010
Brief summary: not given

location not given

Mar 2006  female
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: Alichi
Relationship: Father
Other conditions: None

Last updated: 08 Sep 2006
Brief summary: She has bilateral phacomelia of her upper arms. Echocardiography showed a patent ductus arteriosus and ventricular septal defect, with an overiding aorta, at the moment she is on furosemide and Kcl to manage her heart condition, since she developed

Jun 2000  male
Family type: two parent family
Siblings: 3
Disabled siblings: 0
Username: Guinaveire
Relationship: Mother
Other conditions: None

Last updated: 05 Sep 2006
Brief summary: My son has learning problems and some slight behavioural problems, it is thought that he has a very mild form of CdLS, or a 3q duplication phenocopy, He is a very happy child in a main stream school, although I am not sure how much longer he will remain t

Apr 2006  not given
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: johntanya
Relationship: Parent
Last updated: 31 Aug 2006
Brief summary: no summary given

Feb 2006  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: RalphWebb
Relationship: Mother
Other conditions: None

Last updated: 22 Aug 2006
Brief summary: Diagnosed at 12 weeks of age.

Midlothian ( Scotland )

Feb 2008  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: mummym
Relationship: Mother
Other conditions: None

Last updated: 19 Oct 2008
Brief summary: Heart defect (VSD and ASD) found at 8 weeks and chromosome testing to look for syndrome as he also had a small head, low set ears, undescended testes and reflux. Testing showed nothing, however detailed DNA tests recently diagnosed deletion of gene in ch

Scotland

Nov 2006  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: GregorLewis
Relationship: Mother
Last updated: 19 Feb 2007
Brief summary: Roberts syndrome suspected at 20 week scan. Cornelia De Lange syndrome suspected after birth.

Wales / Cymru

Jul 2006  male
Family type: two parent family
Siblings: 3
Disabled siblings: 0
Username: Kellgarn
Relationship: Mother
Other conditions: None

Last updated: 01 Jun 2007
Brief summary: Sonny was born last July*******weeks early and was diagnosed with suspected cdls by day 2. He is my 4th child and 1st to have any health problems.

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