Teenager Lucy Franks took it in her stride when she underwent heart surgery to have a faulty valve replaced with one from a calf.
At 13, it was the second major operation she had endured as she grew up but Lucy had always been determined to live her life to the full.
Her sudden death at 19, from complications caused by pneumonia on her already weak heart, has left her family shocked but determined to remember her with a smile.
The help given by staff to Lucy and the family, including her older brother Sean, 29, has spurred her parents, Peter and Carole, into giving something back.
Mrs Franks, 55, from Shoreham, said: "You hear stories about how terrible the NHS can be but we have had nothing but excellent treatment and care.
"The people at the unit did everything they could for Lucy and were just as shocked and upset by her death as us."
Lucy was born at Southlands Hospital in Shoreham on December 17, 1984. At five days old she was transferred to a cardiac unit at Southampton General Hospital, where doctors found she had a narrow aorta so her blood was not pumping away from her heart properly.
She had a successful operation. When she was 13, doctors decided it was time to replace the valve in her heart and she faced a second major operation.
It was a success but there were constant check-ups to ensure everything was working properly and Lucy knew she was going to have to have a new valve put in in the future.
Lucy went to Worthing Sixth-Form College and worked at the Crabtree pub in Shoreham.
Lucy had another check-up in January this year and everything appeared to be going well. Then in July she came down with a rare form of pneumonia.
Doctors also found she was suffering from glandular fever.
Lucy made good progress but died in hospital on August 7.
Her family and friends are now working to raise money to help equip a ward being built at Southampton General.
About £1,200 has already been raised. Mr Franks, 56, said: "We want them to know how grateful we are."
The family is donating money to Wessex Heartbeat, the appeal for the Wessex Cardiac Unit at the hospital.
Anyone who wants to make a donation can send it to Teresa Baker, Caring Lady Funeral Director, 68 High Street, Shoreham, 01273 464647.
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