Battling Carys beats the odds to reach a birthday milestone

111416_CARYS_BIBBY_21/04/11''(l-r) Tyler Bibby (8), Taylor Bibby (12), Craig Bibby (34) Carys Bibby (5), Helen Bibby (33) and Layla (18months)''Carys Bibby, has Charge syndrome, celebrates her fifth birthday with her family at home in Havant.''Picture: Allan Hutchings (111416-157)
111416_CARYS_BIBBY_21/04/11''(l-r) Tyler Bibby (8), Taylor Bibby (12), Craig Bibby (34) Carys Bibby (5), Helen Bibby (33) and Layla (18months)''Carys Bibby, has Charge syndrome, celebrates her fifth birthday with her family at home in Havant.''Picture: Allan Hutchings (111416-157)

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DRESSED like a princess, little Carys Bibby is filled with delight as she celebrates her fifth birthday.

The youngster has battled the odds since being born with a rare, life-threatening genetic condition that affects her heart and stops her from breathing properly.

Carys spent much of the first two years of her life in hospital, and has undergone countless operations, including multiple open heart surgeries and regular treatment on her airways.

She had to be resuscitated at birth and it was feared she would not survive.

But feisty Carys fought on and has astounded medics by reaching her milestone birthday.

Relatives and friends came together at the youngster’s family home in Leigh Park to celebrate the occasion.

Dad Craig, 34, who works as a police officer in Portsmouth, said: ‘Carys is very, very strong. She just deals with it. She’s an amazing kid.

‘I don’t think we can really believe she’s here. It’s nice to finally have a proper birthday party for her. It’s huge. I’m still in shock really.

‘If I had the world I would give it to her. I just can’t give her enough. To live to five is amazing.’

Mum Helen, 33, also a police officer in Portsmouth, said: ‘Initially we were told she wouldn’t make it a year, but she just carried on and on.

‘Nobody knew what was going to happen. Even now we no longer have a prognosis. She’s amazing.’

Carys – who has two brothers, Taylor, 12, and Tyler, and an 18-month-old sister Layla – is unable to speak or eat and has surgery at Great Ormond Street Hospital in London monthly to help open her airways.

She has round-the-clock nursing care and the family home has been specially adapted.

But the little girl, who attends the Rachel Madocks School in Waterlooville, is set to start at The Mary Rose School in Portsmouth in September and her parents are hopeful for the future.

Helen added: ‘At the moment Carys’s heart is stable, she’s feisty and bubbly, she’s very stubborn, she’s loveable and cheeky.

‘No-one will ever be able to predict the future but Carys is making her own future at the moment and that’s all that matters.’

Parents throw their support behind children’s unit

PARENTS Helen and Craig are backing calls for the under-threat children’s cardiac unit where five-year-old Carys receives care to stay open.

Despite being ranked second in the UK, the unit at Southampton General Hospital could be shut in a cost-cutting drive.

Health officials want to cut the UK’s 11 centres for children’s heart surgery down to six or seven.

The unit at Southampton General is one of just four options which will be put out for public consultation, before the Joint Committee of Primary Care Trusts makes its final decision.

If the cardiac unit shuts, children who need heart surgery will have to travel to London or Bristol for treatment.

Mrs Bibby, 33, said: ‘Carys wouldn’t be here without the cardiac unit.

‘I can’t believe they are even considering closing it.

‘If it’s shut we will either have to go to Great Ormond Street or Bristol for all of Carys’s cardiac treatment.

‘The support network for families at Southampton is amazing.

‘The staff are incredible, they do absolutely anything to keep you and your child together and the aftercare for parents and families is incredible.

‘A massive part of ours and Carys’s life has been spent at the unit.’

The public consultation will close on July 1.

CHARGE SYNDROME

Charge syndrome is a pattern of birth defects affecting one in 10,000 births worldwide.

It is an extremely complex condition that requires expert medial assistance.

Babies with Charge syndrome are often born with life-threatening birth defects, including complex heart problems and breathing difficulties.

They spend months in the hospital, undergo many surgeries and other treatments and also have problems swallowing and breathing.

Most patients have hearing loss, sight loss and balance problems.

Children with Charge syndrome often surpass their medical, physical, educational, and social expectations

Visit specialisedservices.nhs.uk/safeandsustainable.