When my grandson Daniel was born in 2012, 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 was given a few lines of information printed from the internet but that didn’t offer much help or information for the long term.
Oh, how happy we were when we discovered the Ichthyosis Support Group! Instantly we were supported with ongoing care information and personal support. We were very fortunate to be offered a place on our first ISG ‘family day’ at Blenheim Palace when he was just 7 months old. On that day, the overwhelming support, friendship and advice twinned with the opportunity to meet with medical professionals was just what we needed. We left knowing we would be supported, we had hope and new lifelong friends – we were part of the ‘Ichthyfamily’!
We have attended every Family Day or Family 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 11 now and has nothing but fond memories of being with – again his words – his ‘friends with special skin’. Daniel has also attended 2 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 you tend to just focus 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 the majority of them are VOLUNTEERS!
I was honoured to become an Ambassador a couple of years ago and have been gradually learning what I can do to support both the ISG team and other families. I found being an Ambassador very rewarding so, with a desire to increase the impact I can have in the future, I have recently become a Trustee. I am excited to now be part of the team that will ensure the amazing ISG continues to be, for new families, the lifeline we so needed.
A couple of years ago I also set up a small regular monthly donation to help fund the amazing work the charity does. The ISG tries hard to make sure Family Days and Family Conferences are made more affordable for families, and fund the children’s camps. A variety of research is also identified and funded by the ISG – obviously all of that doesn’t come cheap so fundraising and donations are vital. If you can, I would encourage you to also consider a regular donation.
Please don’t hesitate to contact the ISG if you would like support – I can promise everyone will do their best to help.