Sunday Mirror (Northern Ireland)
Thanks a million... or make it £3.65m
FROM little Ansel Hayward’s beaming smile you would never guess his harrowing start to life.
For six years he has fought rare medical conditions and overcome a series of traumas with pioneering care from leading specialists.
And now, with the help of the Sunday Mirror, he is among thousands of kids being offered a fresh beacon of hope.
This week a new centre opened its doors to help children from across the UK fight the world’s most complex illnesses – some so rare they have not even been diagnosed.
The Star Appeal for a world-class unit to tackle rare diseases raised £3.65million in a matter of months.
Donations to help boost the appeal flooded in from our army of caring readers after we publicised the children’s plight.
Now leading officials from the Rare Disease Centre, based at Birmingham Children’s Hospital, have sent a heartfelt message to everyone who contributed to the cause saying: “Thank you so much – you have saved lives.”
Ansel is among 9,000 young patients with more than 500 conditions who are due to receive care from the new centre.
SURGERY
Mum Claire was 12 weeks pregnant when she was told her baby had a condition called exompholos, which meant he was born with his bowel and liver outside his body.
He could not breathe unaided, he was deaf and later started suffering from life-threatening epileptic fits which require brain surgery.
His illnesses are so complex that there is no unifying diagnosis for his catalogue of conditions.
But Claire, 39, said: “It has been incredibly difficult but we feel very fortunate to have Ansel.”
Claire, who lives with university lecturer husband Scott, 43, and elder son Finlay, 11, in Birmingham, added: “It’s difficult not knowing what his condition is but he’s a phenomenal, happy little boy.
“We owe a great deal to these medics and this centre is amazing.”
Specialists say 75 per cent of all rare diseases affect children, with 30 per cent of such patients dying before the age of five.
The Star Appeal’s aim was to bring specialists in assessment, diagnosis, treatment and research all together under one roof.
As the original target of £3.5million was met and then passed, the new centre, named Waterfall House after a vote by the public, took shape.
The Sunday Mirror was granted exclusive access to it ahead of the official opening.
The ground floor is a dedicated outpatient centre with nine consultation rooms, a sensory unit, quiet rooms and a playground.
Video conference links will let experts from all over the world share vital information.
The centre will also house pioneering research designed to further the understanding of hundreds of complex disorders.
Its experts are already helping cystic fibrosis patients with the revolutionary drug Orkambi.
Trials show the medication can help lung function, cut hospital admissions and reduce the need for physio.
But it is not yet available on the NHS to Britain’s 5,750 cystic fibrosis patients who have a specific mutated gene and could benefit from it.
Two years ago the Government body NICE rejected NHS funding for the drug because of its annual cost of £104,000 per patient.
DIAGNOSIS
Joanne Osmond, the cystic fibrosis service manager for Birmingham Children’s Hospital, said: “We would love to have this drug. Much of the treatment for cystic fibrosis is about buying time.”
Medics at the Rare Disease
Centre have already proved they are the best in the business in early diagnosis.
Lindsey Orton, 43, spent months begging doctors to help when her daughter Lillie-Mae suffered painful constipation. She visited four hospitals more than 70 times but was repeatedly fobbed off.
It was only when she came to the centre she discovered her daughter had a rare digestive deformity.
Now six-year-old Lillie-Mae, who has a twin brother named Henry, is on a daily dose of
medication. Lindsey, who lives in Rugeley, Staffs, with gas engineer husband Chris, 54, said: “We were failed by four different hospitals but within five minutes of our appointment at Birmingham they diagnosed her.”
Three-year-old Midas Avery was born with Hirschsprung Disease, a condition where a section of the bowels is missing, and has spent much of his short life in hospital.
His mum Kerry Bowen, 37, who lives with his dad Steve and their elder daughter Maia, 13, in Bridgnorth, Shropshire, said: “We’re so fortunate to have this hospital and this new unit. It will change everything for us.”
Jack Powell, 10, was one of the first children in the UK to be diagnosed with cystic fibrosis using “heel prick” blood tests introduced in 2008. Now, after more than a decade of care at Birmingham Children’s Hospital, he has been able to combat his illness – even taking part in jujitsu and karate.
Mum Hayley, 34, who lives with police officer husband Steven, 37, in Walsall, West Midlands, said: “It has been hard but we don’t let him use it as an excuse. He’s a star.”
NHS trust chief exec Sarah-Jane Marsh said: “I was incredibly proud to see our worldclass Rare Diseases Centre open its doors.
“I want to say a massive ‘thank you’ to every Sunday Mirror reader who donated to our appeal.”
Paediatrics expert Prof Tim Barrett added: “We are on the start of an incredible journey with rare diseases and are incredibly thankful to everyone who donated.
“Thanks to your generosity, we can use this centre to look after children in the unique and personalised way they deserve.”
If you’d like mor info on the hospital and the patients it treats visit www.bch.
org.uk
We owe a great deal to these medics and this centre is amazing CLAIRE HAYWARD MUM OF YOUNG PATIENT ANSEL