Welcome to Ordinary World

Welcome to ordinary world

WELCOME TO
ORDINARY WORLD

All some children dream of is getting back to the ordinary world.

Your support can help provide more extraordinary care to get them there.

Ordinary World is the latest campaign from Great Ormond Street Hospital Children’s Charity.

ABOUT ORDINARY WORLD

The Ordinary World campaign aims to demonstrate the reality of seriously ill children missing out on the ordinary, everyday things we all take for granted.

The final narration from actress, Olivia Colman, highlights that the children at Great Ormond Street Hospital would do anything to go back to everyday living. The Golden Globe Award-winning actor says: “All some children dream of is getting back to the ordinary world, you can help us get them there.

“It’s an honour to help Great Ormond Street Hospital Children’s Charity. The work they do to help patients and families when they really need it is vital. For many families, the hospital is their last hope, the place to go when no one else can help and it was a privilege to be able to help in this way.”

Stars of the campaign Delano, nine, from Hackney and Jessica, 10, from South Wales, have both spent significant periods of their life in hospital, missing out on the ordinary world.

“There are things I wish I could do more, like go to school, swim and play sports, but one day, I will join a football team.

MEET DELANO

DOING WHAT HE LOVES

Nine-year-old Delano is the youngest of seven brothers and sisters. He is really sociable and loves being outside, sometimes sitting on the doorstep talking to his neighbours, or playing football in the park.

At school, he says his favourite things to do are to play with his friends, do sports and laugh, but for three days every week, Delano cannot do the things he loves.

Instead, he comes to Great Ormond Street Hospital for dialysis.

A LIFE-CHANGING DIAGNOSIS

In 2007, when he was just a few months’ old, Delano was diagnosed with chronic renal failure.

“A few weeks after he was born, the health visitor came to do his weight and noticed something was wrong,” explains Diana, Delano’s mum.

“She sent us to our local hospital, where they found that his potassium levels were all over the place, and we were transferred by ambulance to the Evelina London Children’s Hospital.

“It was a really tough time. He had fits and then it was a fight to get him eating. In June 2007, Delano was referred to Great Ormond Street Hospital. They tried to manage it with medication but in 2009 he went on dialysis.

”Delano had a kidney transplant from a deceased donor just before he turned five-years-old.

“It was amazing for him to be free from dialysis, but then the transplanted kidney started to go wrong and doctors decided to put him back on dialysis to keep it healthier. At some point, he will have to go back on the transplant list."

“It was a really tough time."

“Through it all, he’s still the same lively, bubbly little boy. Most parents notice something is wrong when their child is tired, but Delano is always full of energy and loves to try new things.

"He misses out on quite a lot because of all the time he has to spend in hospital, but he does his best to catch up when he can.”

LIFE ON DIALYSIS

“We have a dialysis 'family' on Eagle Ward,” says Diana.

“There is always someone there to support you. I get on really well with some of the nurses. One nurse has been there since Delano was first diagnosed, so she has seen him grow up.”

Every Tuesday, Thursday and Saturday, Delano comes to Great Ormond Street Hospital for four hours of dialysis on Eagle Ward. When at the hospital, Delano particularly enjoys spending time with his play specialist, Lynsey.

“Through it all, he’s still the same lively, bubbly little boy."

“When I’m on my machine, we make stuff, we play, we film, we cook – we even see celebrities!” says Delano. “My favourite thing to do with Lynsey is eat chocolate. We also play a game called the ‘cheesy Wotsit’ game, where you put a shower cap on your head, cover it in shaving foam, and then throw Wotsits at each other.

“Being in hospital is rubbish because you don’t get to do a lot outside of hospital, but it’s always good to play with Lynsey. We also have teachers that come to the ward, and my hospital teacher is in contact with my school teacher, so I don’t fall behind too much.

“There are things I wish I could do more, like go to school, swim and play sports, but one day, I will join a football team.”

TAKING PART IN ORDINARY WORLD

“When I was being filmed, I was told I had to look straight ahead and look out the window. The hardest part was looking straight and then turning my head, because eventually my neck started to hurt. The camera was very big and they had lots of equipment!

“My friends and family will think I’m famous,” says Delano (pictured with his cousin Zhara).

“They’ll all be asking me for autographs."

My favourite teddy, Mr Blue, was in the film too – he goes with me everywhere I go!”

MEET JESSICA

SURVIVING MENINGITIS

Jessica used to be self-conscious about her scars. Now she sees them as her war trophies.

At just 10 months old, Jessica caught pneumococcal sepsis meningitis, and on 26 September 2009 she was rushed to Great Ormond Street Hospital where doctors battled to save her life. Jessica spent three weeks on the Paediatric Intensive Care Unit (PICU) and week on a ward whilst her parents stayed nearby in charity-funded parent accommodation.

She lost the tips of her fingers, had skin grafts on her arm and elbow, surgery on her knee and surgery to remove skin and muscle that had died.

Now eight years old, she has had 35 operations: 10 on her leg, 12 on her arm, two skin grafts each on her leg, her hand, and her arm.

LOVE YOUR SCARS

“Jessica used to be quite self-conscious about her scars,” says Jessica’s mum, Lucy. “She finds it very hard when people stare – she is quite happy to explain what happened to her, but not if they stare.”

When Jessica was ill in intensive care, the blood supply to multiple different bones was impaired, preventing them from growing properly. Over the years, she has had a few operations at Great Ormond Street Hospital to lengthen her left leg, improve movement in her left arm and leg, and skin grafts to reduce her scars.

“She has had lots of plastic surgery to make the scars smaller and prettier, and she’s much happier with how they look now. She has become far more confident.

“She finds it very hard when people stare."

“At her new school they are really into rugby and they see her scars as war trophies. The head teacher and other teachers have really helped her to feel comfortable, so much so that she is now wearing skirts and dresses.”

PIONEERING SURGERY

In July 2016, Jessica was the first patient at Great Ormond Street Hospital to have a particular type of surgery on the femur bone in her left arm and hand. “The end of her radius (the large bone in the forearm) wasn’t growing properly,” explains Dr Gill Smith, Consultant Plastic Surgeon who performed the procedure.

“The shape of the joint on the radius was like a volcano, dipped in the middle when it’s supposed to be flat. It was going to get worse as she grew. Our options were to think about lengthening her bone, replacing her radius or trying this operation.

“The circulation was deteriorating in her left hand,” recalls Lucy. “I noticed it was quite blue and she couldn’t use her hand. Jessica was in pain every day and some days the pain would be so bad that it would make her cry.

“She was a little scared the night before the operation and found it hard to sleep, but as soon as she woke up from the anaesthetic, she could feel the difference in her hand. Seven years ago, doctors didn’t think there would be anything that they could do for her hand, and we were told that she might eventually lose it.

"However, not only have they now saved her hand, it is also now straight and will hopefully not be painful anymore. I’m so impressed that they tried this for Jessica – this will give her a far better quality of life."

"Seven years ago, doctors didn’t think there would be anything that they could do for her hand."

Dr Smith explains the operation: “I took the top end of the fibular from the right leg and connected it to the end of the radius, where there was the bad joint. Because it was done with its blood supply it should grow with her."

The operation had never been performed at Great Ormond Street Hospital before, and only a few times elsewhere in the UK and the rest of the world.

“It should mean she doesn’t need multiple lengthening operations that would take her out of school and may not have the same good result,” says Dr Smith.

“It should give her more movement but the big difference will be that, hopefully, she won’t be in any pain.”

LIFE AT GREAT ORMOND STREET HOSPITAL

Jessica has spent around 900 days at Great Ormond Street Hospital.

“There are fun things to do in hospital like drawing, colouring, playing board games – I like snakes and ladders!” says Jessica. “Mum taught me how to play chess too, so sometimes we play that when I’m in hospital. However, there are things that aren’t so fun, too, like waiting for appointments, and the food…

“I miss a lot of school when I’m at the hospital and I’m not well. Sometimes when I come back from hospital into class, I feel a bit lost. I don’t know what to do when I’ve missed things and can’t always join in.”

Jessica and her family have become very familiar with the staff at the hospital. “On Sky Ward, everyone has been extremely welcoming and helpful,” says Lucy.

“Jessica’s plastic team have known her since she was little, and now they are like an extended family. They explain things to her properly and, most importantly, she trusts them.

“Jessica always bakes a strawberry cheesecake for her surgeons when she visits the hospital. Dr Smith has even written her a thank you letter!”

TAKING PART IN ORDINARY WORLD

“The future I have ahead of me now is so much better than anyone could have hoped,” says Jessica. “I don’t think I’ll mind being on TV – it’s like looking back to all the bad times I had compared to the good times I have now.”

Taking part in the filming of Ordinary World was a new experience for Jessica – but one that she took in her stride. “I remember wearing my hair in swirls and braids for the film,” recalls Jessica.

“My favourite teddy, Mr Blue, was in the film too – he goes with me everywhere I go!”

JESSICA AND DELANO ARE ONLY TWO OF 260 NEW CHILDREN WHO ARRIVE AT GREAT ORMOND STREET HOSPITAL EVERY DAY.

Great Ormond Street Hospital is a place where seriously ill children from across the UK come for life-saving treatments.

Young lives hang in the balance every day as patients, families and staff battle the most complex illnesses.

It's at Great Ormond Street Hospital that the brightest minds come together to develop medical breakthroughs that change the lives of thousands of children – and change the world.

And where you'll find – today and every day – some of the bravest people you could ever meet.

This extraordinary place has always depended on charitable support.

WITHOUT YOU

We can't help fund the wards and medical facilities designed around children, and which let the hospital treat more patients.
WITHOUT YOU

We can't help fund the most advanced equipment for treating the toughest and rarest conditions.
WITHOUT YOU

We can't help fund pioneering research to solve medicine's greatest mysteries.
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We can't fund services that help make life in hospital as normal as possible for young patients and their families.
All some children dream of is getting back to the ordinary world.

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