Kay Holby

I first became an Ambassador and found it deeply fulfilling, and it strengthened my commitment to expanding the positive impact I can have in the future. I am now a Trustee. I am honoured to be part of the volunteer team that works hard, to ensure the ISG continues to be a lifeline for new families, just as it was for us when we needed it most.

Having benefited so much from the great work of the ISG following the birth of my grandson Daniel in 2012 I was keen to ‘give something back’. I first became an ambassador and in September 2023 I became a Trustee. With a background in teaching Early Years and Primary School I can use my skills and knowledge to support families with babies and young children.

As a grandmother, my understanding and experience has been shaped by my amazing daughter Emma and wonderful grandson Daniel! He was the first baby born with Ichthyosis in our local hospital. What a scary time that was! No one knew what to do or how to care for him. Thankfully the staff contacted Great Ormond Street Hospital, and they were able to support our local hospital team. My daughter Emma was given a few lines of information printed from the internet but that didn’t offer much help or information for the long term.

We were so happy when we discovered the Ichthyosis Support Group! Instantly we were supported with ongoing care, information and personal support.

We were very fortunate to attend our first ISG ‘family day’ at Blenheim Palace when Daniel was just 7 months old. The overwhelming support, friendship, advice and opportunity to meet with medical professionals was just what we needed. We left that day knowing we would be supported and with new lifelong friends – we were part of the ‘Ichthyfamily’!

We have attended every Family Day or Conference since then and we look forward to them so very much each year. Apart from the obvious support for the adults, the most amazing benefit is that my grandson has friends – in his words - ‘just like me’. He is 13 now and has nothing but fond memories of being with – again his words – his ‘friends with special skin’. Daniel has also attended 3 kids camps with the ISG which he has thoroughly enjoyed, and I know he will continue to attend – eventually being able to be a support for younger children too.

In the early days it’s difficult to not just be focussed on your own situation, but in recent years I have been very aware of the hard work and dedication all the ISG team put in, and latterly I have realised most of them are VOLUNTEERS!

I have also set up a small regular monthly donation to help fund the amazing work the charity does. Family days and conferences are made more affordable for families, children’s camps are funded, and research is identified and funded by the ISG – obviously all of that doesn’t come cheap so fundraising and donations are vital.

I find being a Trustee very rewarding and it has motivated me to find ways to make an even bigger difference in the future.