News from Peterborough City Council

A Peterborough family is taking to the city's streets for the Great Eastern Run and fun run in an effort to help raise £100,000 for Great Ormond Street Hospital on Sunday 12 October 2008.

 

Nine-year-old Bethan-May Slater, a pupil at Orton Wistow Primary School, was originally diagnosed with a rare skin condition called Cutis Marmorata Telangiectatica Congenita (CMTC). However, after being referred to the London hospital further investigations revealed she had an extremely rare skin condition called Glomuvenous Malformation (GVM) - the first case of its kind in the UK.

 

It results in painful lesions all over her body and around her eyes, as well as the potential for blood clots in her peripheral blood supply. Specialists at Great Ormond Street's dermatology unit scoured the world for further information on the rare condition.

 

Seven years after she was diagnosed with GVM, Bethan-May is receiving oral chemo thalidomide - the first person in the world to be treated with this drug for this condition. The objective is to reduce pain, tenderness in lesions and try to stop the disease from progressing. Treatment results in Bethan-May and her family being regular visitors to Great Ormond Street, as well as Peterborough District Hospital.

 

Bethan-May's mum Jacqui Slater, 44, of Svenskaby, Orton Wistow, said: "We realise it's going to be a real challenge trying to raise £100,000 for Great Ormond Street Hospital's dermatology unit. However, the money is vital to fund research into vascular abnormalities and it is the only way to discover how best to manage Bethan-May's condition.

 

"Great Ormond Street Hospital has had remarkable success with their research, treatment and training, working with medical teams throughout the world. However, due to cuts in research budgets the dermatology unit need help from fundraisers.

 

"As Bethan-May's mum and as a family, we are prepared to go out there and do something positive. It is also a way of acknowledging our huge appreciation to hospital staff for their overwhelming support to our brave daughter."

 

Jacqui, her husband Tim, 42, and seven-year-old son Billy are hoping Bethan-May will be able to join them and their family and friends when they kick-start their latest fundraising efforts with the fun run which takes place alongside the Great Eastern Run in Peterborough on Sunday 12 October 2008.

 

Jacqui said: "We are very much a family who live each day as the present is a gift. For Bethan-May, having GVM impacts on her life on a daily basis, from activities, pain, medication, hospital appointments and admissions to looking different. It means we have to think outside the box and do things and handle situations in a different way, however physically or emotionally challenging this may be we always try to be positive in our approach.

 

"For us as parents it is about helping Bethan-May to do what all little girls want to do, from dance, art to sport. It is about pacing her and supporting her so she can partake in activities. It is also about recognising the needs of Billy her younger brother and not leaving him out.

 

"Doing the fun run in our home city, with friends and as a family is a huge opportunity to show a united front that we will do all we can to help the doctors and nurses at Great Ormond Street Hospital help us to help our little girl have the best quality of life she can."

 

Donations can be made by contacting the fundraising department at Great Ormond Street Hospital Children's Charity on 0207 239 3015, stating that monies are for Bethan-May Slater's appeal for the dermatology department SS06, or go to www.justgiving.com/jacquelineslater1.

 

For more information on the Great Eastern Run visit www.greateasternrun.co.uk. The Great Eastern Run is organised by Peterborough City Council, with its main sponsor being Perkins Engines. Other sponsors include: Advance Performance, ASICS UK Ltd, English Partnerships and Fitzwilliam Hospital.