|Marnie has been at the Evelina Hospital in London for the past five weeks|
Marnie Brace was born on 10 May with a "very severe" heart problem which doctors believe may be due to a rare genetic condition.
Her parents have been told her only hope is a heart transplant, a complex and risky procedure with no guarantees.
The thought of the operation "scares me to death", her mother Amy told the BBC.
She said "the call" often comes at night and that "it is such a serious, major operation... it could be our last moments with her."Marnie Brace has very severe heart problems
'One day at a time'
Marnie was born in at the Evelina children's hospital in London after scans revealed a problem with her heart.
She was diagnosed with hypertrophic cardiomyopathy, a thickening of the heart walls, and is suspected of having a genetic condition called Noonan's syndrome.
After the birth, she struggled to gain weight and had to be fed through a tube. Continue reading
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