DebRA - Our featured charity!
| Published: 27th February 2008 12:11 |
DebRA is the national charity working on behalf of individuals and families affected by Epidermolysis Bullosa (EB) - a rare genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously.
There are at least 5,000 people living with this devastating condition in the UK and 500,000 worldwide.
EB has a number of distinct forms: at its mildest, blistering is confined to the hands and feet. In more severe cases, the whole body is affected and wounds heal very slowly, giving rise to scarring, physical deformity and significant disability. Blistering can also affect inner body linings, such as the mouth and oesophagus and, in its most advanced form, EB can be fatal in infancy.
DebRA was founded in 1978 and provides an expert team of nurses and social care staff to work directly with families affected by EB. The charity also commissions world-leading research into the condition with the aim of finding effective treatments and, ultimately, a cure for EB.
Jordan's story 
(Milton Keynes Citizen)
Six year-old Jordan Young was born with Recessive Dystrophic EB - his mum, Fiona, tells us how the family copes with his condition.
I knew something was wrong as soon as Jordan was born. There was skin missing on his hand and his ankle, where he'd rubbed it away. It looked like a great big blister. When I went to feed him, his mouth filled up with blood. It was awful.
Jordan's my third child, but I had to learn how to feed him, how to hold him, how to change his nappy. Even though he's now six, he still needs constant care.
When its bath time - the hand bandages, along with the dressings on the rest of his body have to be gently soaked off in a one hour process, then clean ones re-applied over another hour - all causing Jordan extreme distress and pain.
Every night Jordan wakes up screaming. He dreams about pain all the time and he has never had a pleasant night's sleep.
I wake Jordan up each morning at 7.15 and give him some morphine - one of about 15 - 20 medicines he takes each day. Then I tackle any soiled dressings and his nappy, though not incontinent, he has to wear a nappy because he is attached to a food pump all night. This is his only source of nourishment as he hasn't been able to eat in four years. We go downstairs at about 8am to get his shoes on and his bag ready - and then a taxi comes to take him to school.
Jordan's at a mainstream primary with a dedicated base for children with special needs, and the council provides a full-time carer. I've taken in games like hoop-la so he can play with the other children at break time. When he's at home I'll let him ride his bike and play balloon football with his brothers, even if it means patching him up later. I want him to be able to do some of the things other children do.
In the last year, Jordan's had operations on both of his hands to release them. The surgeons took skin from his thigh and used that to open up his fingers. It took four months for the first hand to heal, but when it did it meant he could hold my hand for the first time. It was a lovely moment.
As Jordan gets older, the questions get more and more difficult to answer. It's heartbreaking to hear a six-year old say they don't want to carry on. I just have to reassure him and tell him how brave he is and that he will get better one day.
How you can help
Because DebRA receives no government funding, DebRA relies on the generosity of the public to carry out its vital work, improving lives and giving hope.
With your help we can make a difference to the lives of families living with EB
For further information about DebRA, please telephone 01344 771961 or visit our website www.debra.org.uk
Diary of Events
April 12th - Luton Station
April 26th - Luton Station
May 24th - Knightsbridge Station
June 8th - Potters Bar Carnival
June 21st - Borehamwood Carnival
July 5th - Meadow Park Famiies Day
July 19th - Kaledoscope Festival ( W.G.C)
September 7th - Hyde Park Womens Challenge
November (tbc) - Festive Fair Borehamwood
