via Nicky at Birmingham Children’s Hospital
Twelve year old Callum fronts £3.65m Star Appeal to build the UK’s first Rare Diseases Centre for children
Twelve year old patient Callum Read, from King’s Heath, is the face of Birmingham Children’s Hospital Charity’s new £3.65 million Star Appeal, which will fund a bespoke Rare Diseases Centre for children – the first of its kind in the UK.
Launched Thursday 1 October, this Appeal will provide families living with a rare or undiagnosed condition with a bespoke centre for diagnosis, assessment, treatment, information, research and peer-to-peer support.
75% of all rare diseases affect children and Callum is one of one of 9,000 children treated at Birmingham Children’s Hospital every year for over 500 rare diseases.
He was born with a condition called Kyphoscoliosis, which is characterised by an abnormal curvature of his spine that affects his growth. What makes Callum’s condition so rare is that his spine is curved as well as twisted, which if left untreated would crush his internal organs. He also knows no-one else with his condition.
At Birmingham Children’s Hospital the level of care for patients and families with rare diseases is exceptional, but the facilities do not match.
Patients such as Callum have different appointments at different times on different days in different clinics all over the hospital, which not only is it time consuming but it can leave families feeling lost and isolated.
In addition, a single rare disease may affect up to 30,000 people in the UK, whereas others may affect just one person, so as a result the feeling of being alone is often heightened.
Under the care of the respiratory team, the cardiac team, dieticians and physiotherapists at Birmingham Children’s Hospital as well as spinal specialists at the Royal Orthopaedic Hospital, Callum currently has to visit Birmingham Children’s Hospital three times every six months. But when he was younger this was as many times as six times every six months.
Lucie Read, Callum’s mum, said: “As a family we are delighted to support the Star Appeal as this new centre would have benefitted us over the last 12 years.
“The care and treatment at the hospital is outstanding, but we would have valued the different specialities being able to work more closely together so there could have been a more co-ordinated approach.
“We were in the lucky position that I could give up work for 10 years to be able to ensure Callum could attend all of his appointments, but we understand that for many families that is not possible.
“Callum too would have benefitted from being able to attend clinics with children who have the same or a similar condition, as there have been times when we have all felt lost and isolated. It would have been good to meet with families going through the same thing as us, in order to share experiences as well as encouragement that there was light at the end of the tunnel.
“This, for Callum, is one of his main reasons for wanting to support the Star Appeal, as once the new centre is built he knows he will be able to give encouragement to children like him, and younger, that they aren’t alone.”
Callum added: “Although I have lived with my condition my whole life, I know it isn’t as bad as what other children have to go through. “Birmingham Children’s Hospital has been there through all of my treatment and this centre will mean so many more children with rare diseases can benefit from their amazing care.”
Dr Larissa Kerecuk, Rare Disease Lead at Birmingham Children’s Hospital, said: “We are committed to making our hospital better for all of our patients.
“Currently our facilities for rare diseases patients aren’t up to standard as they restrict the way that we are able to deliver care – and this needs to change.
“Aptly named, we have called this new fundraising initiative the Star Appeal, as like our children stars are bright and hopeful. Also when you look at the sky stars look like they are in clusters, but when you get up close they are often alone – and this sadly is what many of our rare diseases patients and families feel like.”
The new centre will be designed with patients in mind and light the way for children with rare diseases, as Larissa added: “We always aim to provide the best possible care for the children and young people we look after and are working with children and their families now to help design a really fantastic facility that will best support our young people with rare and/or genetic conditions. But not of this will be possible if we don’t hit our target.”
The new centre will be incorporated within an entirely new building as part of wider redevelopments at the hospital’s Steelhouse Lane site, with a completion date of late 2017.
To get involved with the Star Appeal visit Birmingham Children’s Hospital Charity at bch.org.uk/StarAppeal. Or text STAR to 70800 to donate £5.