Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to DebRA and ensure that Gift Aid is reclaimed on every eligible donation by a taxpayer. So it’s the most efficient way to donate - we raise more, whilst saving time and cutting costs for the DebRA.
About DebRA
DebRA provides an expert team of nurses and social care staff to work directly with families affected by EB, visiting them in their own homes, and by being on 24 hour call should any advice be needed.
The charity also commissions world-leading research into the condition with the aim of finding effective treatments and, ultimately, a cure for EB. 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.
For more information and to view a short video clip showing the reality of living with EB please visit http://www.debra.org.uk/.
Please give generously and thank you for your support.
Isla is only 13 months old but is no stranger to pain and drugs.
Isla has absolutely no Collagen VII, the protein that anchors the layers of skin together, and is classed as having the most severe form of Recessive Dystrophic Epidermolysis Bullosa (RDEB).
Isla was carried around on a padded mattress for the first six weeks of her life with almost no direct physical contact. All her parents wanted to do was give her a big hug but were frightened of hurting her. Isla would scream in pain whenever we changed her bandages, which was every day for the first 12 days of her life. At nearly 13 months old, Isla’s feet have never healed and remain constantly bandaged.
Mum Rachael explains: “Since we found out Isla had EB the regular visits from the DebRA EB nurses have been invaluable. Their advice and honesty has been a lifeline and their practical support has helped us to find the best way to keep Isla’s pain to a minimum and maximise her quality of life. Without their commitment and specialist care, we could not have reached the point at which we are now.
It does get easier with time. Bandaging, administering drugs and handling have become more familiar, we have got to know Isla, grown in confidence, accepted the situation and look to be positive and have focused on raising money for DebRA.”
She added: “People often ask us how we cope or say that they don’t know if they could. For us the answer is simple, you cope because there is hope and there is joy, but fundamentally there is no viable alternative. Looking at the freedoms enjoyed by other children and their parents can be difficult but in many ways you realise that you are still very lucky, just in a slightly different way.
We are grateful to DebRA for all they do for us and other families affected by EB. DebRA relies entirely on voluntary donations to be able to change people’s lives and give hope.
YOUR DONATION CAN REALLY HELP MAKE A DIFFERENCE!
£1 will provide ‘Scratch Mitts’ to prevent a baby born with EB from tearing their own skin
£5 could buy a pair of silver fibre gloves or socks that promotes comfort and can assist in fighting acute skin conditions
£10 could buy a month’s supply of cooling mist spray to reduce the itch and discomfort in warm weather
£25 could pay for one hour of research to bring us closer to finding an effective treatment for EB
£100 is the average cost of dressings needed every two days
About Mölnlycke Health Care
Mölnlycke Health Care is one of the world's leading providers of single-use surgical and wound care products and services to the health care sector. The Surgical Division offers safe and efficient surgical solutions through a number of services and a wide range of high quality single-use surgical products. The Wound Care division offers a wide range of wound care solutions, including products with Safetac® technology and the Avance Negative Pressure Wound Therapy System, providing gentle and effective wound healing to patients and caregivers.
The Challenge Ahead
Around 40 walkers from Mölnlycke Health Care will be taking part in the 3 peaks challenge in support of DebRA on Saturday 11 September 2010.
The walk is a tad under 25 miles (40km) and will take approximately 12-15 hours given reasonable weather and underfoot conditions. The traditional challenge is to finish in under 12 hours.
The total ascent for all three peaks is around 1600m (5250ft) - which is about 300m less than those who made it as far as Y Garn in last year!
