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Member details for mjh1982

Last updated: 06 Nov 2016
 

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mjh1982
Family type: Two parent family
Siblings: 3
Disabled siblings: 0
Jul 2015 Female
Relationship: Mother
Conditions: Cardiofaciocutaneous syndrome (14)
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

Location: Essex
Languages spoken: english
Member since: 13 Nov 2015
Full story:
Our daughter Bella was diagnosed with CFC syndrome in May 2016. She had open heart surgery for her severe pulmonary valve stenosis in Nov 2015. She has lots of issues with her feeding, gaining weight and severe vomiting. She is currently on an NG feeding tube and has been since 11 weeks old. This is soon to be replaced with a PEG-J tube. Although we have lots of support from the professionals we would really love to chat to some other families who are going through a similar experience.

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