Robyn was born on the 6th October 2008, a gorgeous little girl, seemingly totally healthy. 

A day old standard check showed she had a heart murmur. 

At 3 weeks old she collapsed in heart failure and was diagnosed at the Royal Brompton Hospital with Severe Aortic Stenosis. 

A balloon valvotomy on the 26th October 2008 saved her life. 

At Christmas it became apparent that the success of the procedure had been short-lived and her valve was narrowing again. 

February 2009 brought another balloon valvotomy but the results were not as they had hoped and her condition stayed the same.  Robyn's breathing was always fast and shallow and she tired very quickly. 

On the 4th June 2009 Robyn had Open Heart Surgery where a Surgical Valvotomy was carried out.  This has been a godsend to her, the results from the operation were brilliant.  She has blossomed since, her hair and nails now grow at a fast rate, where they had not previously.  Her breathing is normal and she is coming on in leaps and bounds crawling and pulling herself onto her feet desperately wanting to walk.

Robyn will need further surgery in the future, a valve replacement.  This could be next year, or in 10 years time, it is dependent on how long the results of the previous operation last for.

The Children`s Heart Federation is dedicated to helping children, like Robyn, with congenital or acquired heart disease and their families in the UK and Ireland. They are a parent-led charity consisting of 22 organisations, all of which are registered charities whose main aim is the support of families of children with heart conditions.

They aim to improve the quality of life of children and young people living with congenital and acquired heart disease by providing information and working to gain recognition of their needs and ensure adequate resources are available to meet them by:

• providing information and support
• promoting effective services for their care and treatment
• campaigning to improve the clinical and social care of those affected by congenital and acquired heart disease 
• raising awareness of the needs of children with heart conditions and their families. 

Their vision is of a society in which all children with congenital heart disease have both their medical and social needs met so that they can live life to the full.

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