Prior to the birth of my second daughter on the 5th of November 2004, I had never heard of the skin condition known as ichthyosis. Having already been blessed with a beautiful daughter Lydia Mae some 3 years earlier I never imagined her baby sister would be afflicted with an extremely rare congenital condition with a name I could not pronounce.
Annabelle was born a collodion baby, another medical term I had never heard of. There were so many questions and not many people knew the answers. The family were faced with an array of emotions and worries and we needed answers. We were extremely fortunate to be referred to Professor Celia Moss at Birmingham Children’s Hospital who took us under her wing and provided us with a diagnosis of Annabelle’s condition, she has CIE. Professor Moss also recommended that we contact the Ichthyosis Support Group (she is an active member of the ISG’s Medical Advisory Board).
We made contact with the ISG and ultimately became members. It was a comfort to us as a family that there was an organisation out there that we could turn to for support. We attended the 10 year anniversary of the ISG in 2007 and it was at that event that it was suggested to me that I might wish to become more involved with the group. My first reaction was that I have more than enough in my life to contend with without taking on more – but it got me thinking. After a little more cajoling I accepted an invitation to attend a meeting of the group and eventually made the decision to become actively involved. I accepted the offer to become Chairman of the group on the 25th January 2008.
If you were to ask me why I decided to become a trustee my answer would be that quite simply I want to help to make a difference. I am reminded everyday when I look at my beautiful daughter Annabelle that I want to do all I can to make things better for her and in so doing all the families affected by ichthyosis and of course all those families who have yet to face this distressing condition. I am privileged to be part of a special group of people who sit on the ISG committee and who give of themselves their time and commitment (for no financial reward) to running the ISG. Without their resolve and determination the ISG would not exist and that would be an enormous loss.
As you may be aware the ISG has no income other than that it generates for itself through members fundraising activities, donations and by applying for grants. We need to constantly generate funds to pay for the ‘infrastructure’ that constitutes the ISG. We often refer to fundraising opportunities and as an example if every one of our 700 member families were to raise just £100 each we would generate £70,000! Between us all we can make a difference, we can support research initiatives into the condition, we can raise awareness of the condition within the medical profession, support our members in all sorts of activities, and ultimately make life better for families and individuals who live with ichthyosis on a daily basis.
Thank you for reading this, please do get involved, do as much or as little as you can – every little helps. Remember we also have our fundraising guide which will give you ideas on how to go about raising funds, once you get started there will be no stopping you!