Sunday Mirror (Northern Ireland)
OUR REWARDS
His smile means everything. We’d be lost without the help we get at Birmingham STACY STANDLEY MUM OF JOSHUA, ONE, WHO SUFFERS RARE CONDITION
LITTLE Eden Quaiser has spent more than two thirds of her short life in the sterile corridors of a hospital ward.
The toddler’s beaming smile belies a “ticking time-bomb” condition which threatens to snatch her life away at any moment.
But despite her harrowing illness the toddler’s parents thank their lucky stars every day that she is being supervised by some of Britain’s brightest medics.
Eden’s story is just one of dozens of miracles which echo around the wards of Birmingham Children’s Hospital every day.
Eight years ago the hospital was on the brink of ruin, with an NHS probe describing health provision as “third-class” and saying some treatment fell below standards provided in the world’s poorest countries.
Now the hospital is blazing a trail for the rest of the NHS after being improved by consulting the very workforce who had been overlooked for so long.
And today the Sunday Mirror – which has backed a £3.65million fundraising drive to help the UK’s most desperately ill children – has been granted unprecedented access to the hospital.
BEDSIDE
As health chiefs look set to meet the cash target “within weeks”, we met the inspirational staff, brave patients and indomitable parents who give hope to hundreds of children.
Among them was three-yearold Eden, who suffers from two forms of a rare genetic disorder called Ehlers-Danlos syndrome. The illness can cause spontaneous organ ruptures and sudden death.
The complex nature of her condition means she is the only child in the UK to suffer from the disease and one of only a handful of sufferers in the world.
Since she relapsed two months ago, her mother, Sahkia Mahmood, 36, has spent almost every minute of every day by her bedside in a segregated unit.
She said: “We don’t know what the future holds. Eden was born premature and she had breathing difficulties from day one.
“Now she suffers from developmental delays, feeding difficulties and learning difficulties.
“It’s difficult because you’re seeing a child in pain every single day and know they’re going to be on pain relief for their entire life.
“It’s upsetting because every single day you think to yourself: ‘How far can you go with Eden to make things normal for her?’
“The more mobile she gets the more dangerous it is. It wasn’t until we came to Birmingham that we got the help we needed.”
Specialists at the Midlands
hospital were criticised eight years ago for having insufficient numbers of beds, operating theatres and trained staff.
But last month the Care Quality Commission praised the NHS trust for “working effectively to provide the best care” and handed it an “outstanding” rating.
Now health chiefs have said its approach of asking its 3,700strong workforce how to improve services should be adopted across the NHS.
Dr Larissa Kerecuk, Rare Disease Lead for the hospital, said: “This should be a model for the rest of the country.
“We have 34 different specialists. Everybody that works here is an expert in their own field. We have a fantastic team of people who really go the extra mile.”
“It’s about thinking out of the box too. The rest of the NHS could learn from what we do. Not only did the hospital listen to staff, they also listened to families and patients.”
STINGING
In a recent review, the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions said the care of rare disease patients across the UK was poorly co-ordinated. But the stinging report praised Birmingham.
It said: “A number of patient representatives praised the positive impact [the hospital] had on the lives of patients and families under the care of Birmingham Children’s Hospital.”
Among those to benefit from the centre’s unique approach to rare disease is Stacy Standley, 28, from South Yardley, Birmingham, whose one-year-old son Joshua has a string of rare conditions.
He has an undiagnosed rare degenerative disease, global development disorder and “failure to thrive”, which means he is regressing.
His parents spent the first year of his life asking their GP to help him after he was repeatedly struck down with chest infections and stopped developing.
Their local doctor – who they
say they visited more than 10 times – told them he was a “lazy baby” and repeatedly prescribed antibiotics. It was only last month that they checked in to BCH and specialist medics discovered his conditions.
Joshua’s parents have been told his state is so rare they cannot say specifically what is causing it or how to treat it.
Mum Stacy, who miscarried her first child two years ago, says she doesn’t know if he’ll live to two or 22, but is determined to give him the best shot at life. They are now part of a trial to examine genes, known as the 100,000 Genomes Project. Stacy, who lives with partner Steven, 32, said: “When we found out it was heartbreaking, I can’t remember how many times I cried.
“As long as he’s smiling it means everything. He gets frustrated, he wants to play with other kids, and that’s the worst feeling – knowing he may not be able to join in.
“We’d be lost without the help we’ve had in Birmingham.”
Last year the Sunday Mirror teamed up with
Birmingham
I’m amazed at how much these parents do for their children... and how brave the children are
JANET TURBERVILLE-GREENLEY ROALD DAHL NURSE AT BCH
Children’s Hospital to secure funds to help some of the UK’s most desperately ill children.
The hospital’s Star Appeal to raise £3.65million for a pioneering rare disease unit has passed the £3m mark thanks to thousands of donations, which included a £700,000 Government pledge.
Birmingham Children’s Hospital treats more than one in 20 of all children from across the UK who suffer rare diseases.
MIRACLES
That accounts for more than 9,000 youngsters a year fighting more than 500 frightening illnesses. The Star Appeal will create the UK’s first Rare Diseases Centre to provide diagnosis, coordinated care, research, treatment – and hope.
It will benefit patients like Amarah, five, who has seen 21 specialists in at least five UK hospitals as she copes with at least 13 different unique conditions. The new Rare Disease Centre would mean all those specialists are all in one place so she would not have to travel across the UK to get the help she needs.
Her mother – full-time carer Reena Price from Solihull – said: “When Amarah was born, no-one could tell us what was wrong with her.
“I can’t begin to articulate how it affected us. To watch your child struggle or suffer is heartbreaking.”
Janet Turberville-Greenley is a Roald Dahl nurse, whose work is funded by the late author’s charity.
She works on rare disease transitions, and said: “I’m amazed at how much these parents do for their children and how brave the children are. They are miracles.”