The Phoebe Research Fund was founded in February 2015 by myself, Zoe Crowson, to facilitate funding towards a possible cure for my daughter Phoebe and fellow Recessive Dystrophic Epidermolysis Bullosa Sufferers like her. There are only 5000 EB sufferers in the UK and only 20% have the type of EB Phoebe suffers from. In effect Phoebe has a rare form of a rare disease and in actual fact it took St Thomas’s Hospital 3 months to determine the type, a situation that would normally take just 24 hrs.
The idea of The Phoebe Research Fund is that because it’s so rare, finding a cure is in fact harder as there is currently no government funding. Furthermore, any support from other sources tends to go on other areas which will help sufferers of a different type of EB which is predominantly Simplex. All funds raised by The Phoebe Research Fund will go into research for Recessive Dystrophic EB as this the life limiting form and in fact the worst type of EB.
Over the years since having Phoebe I’ve met many parents that have a whole host of challenges to face. It’s not just the fact they have EB it’s the exclusion from society that not only the child but parent has to deal with. Phoebe is getting to the age where she knows that she can’t attend most parties and that I have to continually have to say no, slow down and be careful. Life becomes a constant risk assessment. Added to this is the constant attention that her blisters and wound care require, throughout the day and night as they are not self limiting. I’m sure you will agree that this is not what anyone would wish for their child.
It has to be said that everyone of these sufferers, and Phoebe is by no means the worst, are incredibly brave in the way they deal with their disability. They possess a pain threshold that the average human being doesn’t seem to have or perhaps they are simply so used to being in constant pain that their pain management is much better than ours.
