by Wendy, Heather’s mum
What can I say about RDEB?
Life is painful, tough and ceaseless in intensity.
But those with EB are amazingly resilient, brave and determined, keeping a sense of humour in the most difficult of times.
As a bereaved mother I didn’t realise the impact of EB until I lost my beautiful daughter Heather. It was then that I understood how much of our life was dictated by dressings, hospital appointments, worry and constant planning. All of these things slotted into our normal life, whilst making sure we had fun and enjoyment when possible. But it’s only through determination and strength of character that severe EB sufferers and their families survive.
Although it won’t help my darling girl, I want to see a day when EB is cured. Research on a cure is the way forward and that is why Cure EB is so very important.
