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My son Freddie was born on 21st June 2009. He was born with a very rare skin condition, Ichthyosis.
The condition causes you skin to grow to fast, this results in many complications as your skin is the the largest organ of your body.
I never thought my son would die from this condition, I knew life was going to be tough for him and we would have to fill him with tremedous amounts confidence and tell him every day how special he was and how we loved him more then words could say, we would have made his life great, no matter what, but this wasn't to be.
There are many different cases of Ichthyosis and my sons was sever, we were sent home from hospital with little information and I battled for weeks with the medical profession to get my son help as he wasn't growing but no one listend to me and I had to take my son to our local hospital in the end and say I am not leaving till you help my son. He passed away 10 days later after a truly brave battle to hold on to life.
The medical profession have little knowledge on Ichthyosis and it is my aim to raise awareness and money to help people deal with this challenging condition, so the next baby born with this condition has the best chance of survival. Most importantly I want to keep the memory of my son alive, as he truly was an amazing little baby, brave and strong and I think if he had of lived he would have grown up to be a really great person.
