Our story of courage and hope

Bianca Percival is hoping that Father Christmas will bring her a bicycle. If he does, then she'll almost certainly go to the park for a long ride before lunch. And, if she gets an S Club Juniors video - her favourite band - she will mimic their dance routines after lunch. Afterwards, she will go for a walk with her big brothers and the family dogs. And, since it's a special day, she'll probably be allowed to stay up late.

It might sound like the Christmas of any lucky seven-year-old. But, until recently, festivities in the Percival household have always been subdued, cloaked in the fear that Bianca might not live to see the New Year.

Bianca had to be carried up and down stairs to keep exertion to a minimum. Father Christmas would always bring "quiet" presents and she couldn't walk anywhere, let alone run or dance. She'd have to go to bed early to avoid getting too tired, and her brothers, Lewis, 18, and Lee, 11, had to be sure to keep any festive high spirits to a minimum.

"Usually at Christmas, the day is geared towards Bianca being calm and quiet. She couldn't get too excited or tired and her brothers always had to be careful not to make too much noise," says Bianca's mother, Tracie. "Our choice of presents has always been restricted because she could never be too energetic." Bianca was born with congenital heart disease, which affects one in every 100 newborns. For Bianca, this has meant 14 operations in only seven years. Even so, she remains a feisty, bubbly little girl, determined to push the boundaries of her limitations.

But by the time she underwent open-heart surgery for the third time just a few weeks ago, even the slightest hint of over-activity would cause her heart to overwork until she became breathless, then blue.

She had to be pushed everywhere in a buggy, rather than walking, and was accompanied at school by a specially appointed carer who made sure that Bianca did not succumb to the urge to run around the playground with her friends.

"Wherever she went, either I or her carer had to go," says Tracie. "She couldn't run around with her friends. She couldn't go swimming because she'd get too cold. We could never go out and watch fireworks. She certainly couldn't go on a plane and holidays had to be geared to whether there were disabled facilities. We couldn't even go out for a walk in the park."

So, while other children were asking for PlayStations and the latest Barbie doll, Bianca's biggest Christmas wish was simply to be able to walk and run around with her friends. And now, even though Bianca is effectively functioning on just half a heart, her life has changed beyond recognition, due to the extraordinary work of surgeons at Great Ormond Street Hospital.

She was only five days old when doctors noticed a heart murmur. While Tracie recovered from the Caesarean delivery, her husband, Paul, a website designer, accompanied their newborn baby to the Royal Brompton Hospital in Fulham for an echocardiogram.

"I looked at the consultant's face when he walked back in with the results and I just knew," remembers Tracie. "He looked absolutely crestfallen. He shook his head and said: 'She's got some holes in her heart.' We were devastated.

"At that point the doctors said she had two holes in her heart and that one of her valves straddled two chambers. But they said they could fix it, so there was hope."

Neither Tracie nor Paul, from Ramsgate, Kent, had heard of the condition. "Suddenly we were in a wilderness, hoping she wasn't going to die," says Tracie. "With babies and hearts it's the same as if someone mentions the word cancer - it strikes the fear of God into you."

The news was harder to take in because Bianca looked so rosy, rather than the bluish colour so often associated with babies with heart disease. In fact, her condition meant that there was too much blood being pumped around her body.

The doctors told the Percivals that Bianca would need three stages of open-heart surgery over a period of years. The first, a pulmonary banding operation to restrict the amount of blood being pumped by the heart, was at only six weeks.

"The feeling of handing your tiny baby over to undergo lifethreatening surgery is horrendous, just terrifying," remembers Tracie. "But this operation was like a lifeline we were clinging on to, we had to accept it.

"Even so, it was extremely hard. One of the babies on the ward died while we were there. It made me realise we're not messing around here, children in this situation do die."

Happily, the operation was a success. Gradually, normal family life resumed. But, at 14 months, when Bianca started crawling, she was taken for a routine check-up. It was then that the family discovered how serious the condition was.

"Her consultant told us it was a lot worse than they'd thought," remembers Tracie. "He told us that it could not be made better and the list of problems seemed endless. Among other things, she had multiple holes in the heart and blockages in the aortic valve.

"My immediate reaction was to try to figure out what I had done wrong. What did I do while I was pregnant to cause such awful problems for my child? I hunted around for a reason to justify why she had been born like this, but there isn't one. The doctors have told us it's not genetic. It's nothing I did. It's just bad luck, and now I accept that."

Bianca began gradually to develop symptoms. She was often breathless, with a blue tinge. The standard colour of her lips and nails was dark purple. The slightest activity would leave her needing to sit down and catch her breath. The contrast between her and other children of her age was stark.

The second operation, at 21 months, was riskier than the first - the mortality rate among children requiring bidirectional Glenn procedure is 15 per cent. The surgery aims to re-route the direction of the blood in the top half of the heart. Bianca's resilience pulled her through. "She sailed through it," says Tracie.

Even so, the family were aware that the third round of open-heart surgery loomed and knew that this last operation had only really bought some time.

"Luckily, Bianca is incredibly creative and spends her time writing stories, reading and drawing," says Tracie. "But when she was unable to run or even walk around, her quality of life was diminishing day by day.

"She was still managing to go to school but in general her life had become extremely restricted and it was bothering her," says Tracie. "The doctors told Bianca that she would be able to run around after the operation, which is all she's ever really wanted to do. I realised that it was worth taking the risk because this was something that could make her life more like that of other seven-year-olds. So we decided to go ahead."

Although Tracie and Paul are now separated, they have supported each other through all Bianca's operations, together with both of their families. On 5 November, Bianca was admitted for surgery to replumb the blood flow of her heart.

"It was a huge success. Immediately afterwards she was pink, even though she is essentially functioning on half a heart," says Tracie. "After all those years of seeing her with blue lips and nails, nothing could be more amazing. The doctors are very pleased and say her heart's okay now.

"She'll never be able to do crosscountry running. But she can dance. She can go and watch fireworks without going blue. She can walk to the local shop without the buggy and walk upstairs on her own."

When Bianca got home from hospital two weeks ago, she began looking forward to a Christmas that will be different from any she has experienced before.

And, for the first time, Christmas Day won't be overshadowed by her condition. "We can look forward now," says Tracie. "We don't have the operations hanging over us. We can get on with looking to the future and doing things other families do.

"We're planning to go to Florida next year. But I think the thing Bianca is looking forward to most of all is going back to school in the New Year and running around the playground for the first time. It sounds basic, but it's not when you can't do it."

Heartline Association is a voluntary organisation which offers help and support to children with heart disorders and their families. For information or donations, call 01276 707636 after the holidays.