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.

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.

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)

Thanks to Retail BID Birmingham for kindly sponsoring the project to allow Birmingham Children’s Hospital Charity’s exhibition to take place.