Young patients from Birmingham Children’s Hospital star in a new photography exhibition in Victoria Square (Photograph: BCH)
Eleven brave patients from Birmingham Children’s Hospital are the stars of a brand new city centre photography exhibition, intended to bolster the hospital’s fundraising efforts to build the UK’s first Rare Diseases Centre for children.
The exhibition, titled Stars of Steelhouse Lane, will be in Victoria Square until Friday 30 September and stars the following patients, all of who are living with a rare or undiagnosed condition:
1. Sixteen-year-old Sultan Ali from Moseley who has Morquio Syndrome
2. Eleven-year-old Matab Jumma from Hodge Hill who has Gaucher’s Disease
3. Seven-year-old Pheobe Glover from Halesowen who has Currarino Triad Syndrome
4. Eleven-year-old Rachel Baumber from Solihull who has Achondroplasia
5. Eight-year-old Noah and six-year-old Ruby Harvey from West Bromwich who both have Glutaric Aciduria Type 1
6. Seven-year-old Matilda Hatton from Walsall who has Sensenbrenner Syndrome
7. Eight-year-old Skye Gardner from Wednesbury who has Williams Syndrome
8. Fifteen-year-old Jordan Haywood from Perton, Wolverhampton who has a rare variant of Klinefelter Syndrome
9. Two-year-old Kadie-Leigh Hamilton from Nuneaton who is currently undiagnosed
10. Four-year-old Thomas Davies from Shrewsbury who has rare, End Stage Renal Disease
11. Thirteen-month-old Sophia Morgan from Mid-Glamorgan who has Mercedes Benz Pattern Craniosynostis.
The exhibition, titled Stars of Steelhouse Lane, will be in Victoria Square until Friday 30 September (Photograph: Kris Askey)
With donations now at just over £1.5 million, the children and their families are determined to help the hospital charity reach its £3.65 million target to fund the Rare Diseases Centre.
All the patients star in the photography exhibition and Matab, Pheobe’s dad and Jordan’s mum have openly and honestly shared their thoughts and feelings in a series of videos.
Pheobe’s dad James, from Halesowen, said: “Being in hospital becomes your life. You don’t go home. You stay there every night and you care and support for your child. Being a dad to Pheobe is one of the most amazing experiences I’ve ever had in my life, but because of her rare condition it’s also the hardest.
“Without the hospital we wouldn’t be where we are today. We know that if Pheobe gets unwell, the hospital is always there and there’s always a light at the end of the tunnel. Having this new Rare Diseases Centre will be massive for Pheobe.”
Birmingham Children’s Hospital Charity’s £3.65 million Star Appeal will change the lives of thousands of patients living with a rare or undiagnosed condition. It will improve diagnosis, ensure patients are at the forefront of medical advances, stop families feeling isolated and alone, bring a team of experts from all the specialities at the hospital under one roof and increase research into rare diseases.
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Rare Diseases Facts and Stats
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The eleven patients featured in the ‘Stars of Steelhouse Lane’ exhibition live with rare diseases (Image: BCH/Kris Askey)
• The new Rare Diseases Centre at Birmingham Children’s Hospital will be the first of its kind in the UK.
• A rare disease is defined as a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000 and requires special, combined efforts to enable patients to be treated effectively.
• Birmingham Children’s Hospital is a specialist centre for rare diseases, treating 6% of all children who have a rare disease from across the UK – that’s over 9,000 children a year with over 500 rare diseases.
• Whilst treatment for these patients is excellent, the hospital’s facilities do not match, meaning many patients spend a lot of time seeing different specialists on different days in different departments all over the hospital.
• Well-known rare diseases include Cystic Fibrosis and Huntington’s disease, but there are many lesser known conditions such as Epidermolysis Bullosa and Lysosomal Storage Disorders that children can inherit from their parents.
• Relatively common, despite being called rare diseases, it is estimated that there are between 6,000 and 8,000 known rare conditions in the UK, with three quarters affecting children. Of these, 30% will sadly die before their fifth birthday.
• Birmingham Children’s Hospital is a recognised leader in treatment and care for diseases and is at the forefront of the genomics revolution which could radically transform the way the hospital diagnoses and treat patients living with a rare or undiagnosed condition.
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Donating
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As well as urging residents to visit the exhibition, the patients and their families are hoping that locals will help them raise the much-needed funds by getting involved in the following ways:
• Making a donation online at http://www.bch.org.uk/stars
• Texting RARE to 70020 to donate £3 (standard network rates apply)
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Photography
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The ‘Stars of Steelhouse Lane’ portrait photographs were captured by photographer Kris Askey (Photograph: Theo Gove-Humphries)
The special exhibition portraits, sponsored by Retail BID Birmingham, were captured by local photographer Kris Askey.
29-year-old Kris, who has previously worked with the Birmingham Children’s Hospital through his design work on Free Radio and the Zombie Walk Birmingham, said:
“My involvement in the project has been a pleasure from start to finish. I was able to share my ideas with Birmingham Children’s Hospital regarding the style and personality that the images should have. They were excited about the idea I proposed about producing a set of striking black and white portraits that connected the ‘Stars of Steelhouse Lane’ title with the images. To do this we agreed on a small red ‘star’ badge that each of the kids wore.
“I couldn’t be more happy about how the project has progressed, and it’s great to see the images up in Birmingham for such a great cause. I have never had any of my images involved in an exhibition before, so to have a whole exhibition featuring images that I have taken is just the biggest bonus to a great project. I hope everyone can find time to see the images, just to get a glimpse of what life is like for the kids and the families living with rare and undiagnosed conditions.”
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For more details on the Stars of Steelhouse Lane visit www.bch.org.uk/starsofsteelhouselane.
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