One year old Carina has cardiomyopathy which damages the heart. She spent her first birthday last week completely sedated on life support at the Royal Brompton where she is waiting a heart transplant.
She became the youngest child to be fitted with a mini defibrillator (ICD) in her chest in November at just 9 months old. The device gives her heart a shock if its rhythm worsens.
Carina can only receive a heart from a one year old to a small five year old. The average waiting time for a heart is around 3 months and the family have now been waiting three months.
Her father Darren Marcangelo is urging the government to create an opt-out organ donation scheme instead of the current opt-in system. He'll be speaking to London Tonight at 6pm.
More top news
A lamp in the tower which houses Big Ben is to be switched off for the first time in more than 70 years.
Sir Bruce entertained audiences for more than seven decades.
Work in the tower will also pause over the bank holiday weekend.