My name is Laura and I have a beautiful little boy called Mekhi who has Lamellar ichthyosis. I no longer say Mekhi ‘suffers’ from ichthyosis because thanks to the support of the Ichthyosis Support Group (ISG), we use creams that really do make the difference and a creaming routine that allows him the complete freedom of comfort from pain. He’s only 2 at the moment, so as he grows older, he’ll be able to communicate to me directly how his skin feels, but so far, no visible problems. I have a very neat schedule of creaming at least 5 times a day, eye drops half-hourly and two baths a day. Having a routine allows me to manage his condition with ease, however it wasn’t always easy and ISG have been there every step along the way to provide me with support and advice.
Mekhi is a wonderful little boy, fun, very funny, extremely lovable, gives the best hugs, very friendly, confident, strong-willed & very energetic. With the support of ISG, I look forward to encouraging that confidence to remain as he grows and realises that he is different, to encourage and support him to embrace his differences, to focus on his many strengths and beautiful characteristics and by meeting others like him as he grows up through ISG, including the workshops and activities they put on is really going to support me with this.
ISG have been a wonderful support. When a condition is so rare, often GPs and hospitals have very little experience in dealing with it and this is where the ISG has really filled the gap and more, providing further support with that extra personal touch. It’s fantastic that ISG is a finalist in the National Lottery Awards and they most definitely deserve to win.