Ray Rowley

When our oldest daughter was born everything was wonderful, apart from a few rough patches on her skin. However, the following day her skin begin to blister and suddenly starting shedding all over and would not stop – nearly all of her skin from the neck down came off and she was left red all over and looked extremely sore.

It was an extremely frightening and very difficult time for my wife and I as we were rushed down to Special Baby Care.

We were transferred to Great Ormond Street Hospital whereby it was confirmed that our baby girl had Bullous Ichthyosis (BIE)

The Ichthyosis Support Group (ISG) contact, Pamelia was on hand to assist and was invaluable with information and practical advice – my wife and I really appreciated this support in what was a crazy first few months of our little girls life.

We soon got into the daily routines of bathing, creaming, special shampoo’s, lotions and also kept a close eye on hydration as my daughter grew fast

A couple of years later I managed to run the London Marathon for the ISG as a gesture of my appreciation for their invaluable support. This led to me meeting the trustees and being invited to become a trustee myself.

As a voluntary trustee I have met some really wonderful people and enjoyed getting to know them all, we now have an Ichthyosis community where families have made lifelong friends with other Ichthyosis sufferers. Our conferences continue to bring families and individuals together and it is a humbling experience to see how much this means to our members and for them to see how much support and knowledge is available. One of my highlights is always when someone meets another sufferer for the first time ever and realise they are not alone.

My daughter is a teenager now and still has a daily skin care routine, lives with her ichthyosis and is healthy, active and very resilient. She has made life-long friends within our ISG community.