Specail Little StarsCreated By entersandman on 15 January 2009

Hi, my little boy is nearly four and a half and has a very rare chromosome disorder, that no other child is known to have. He has just started to crawl and is an incredible little boy who has been through so much in his short life. It was fab to read your post, as like you I have found it really hard to find other parents who have special little stars and have found the journey very isolating. I am so pleased that Harvey is such a happy little boy and its lovely to hear that you are so proud to be his mummy. I feel exactly the same about my angel, he has brought us so much love and happiness and his smile lights up the room. I understand that although we adore our little ones, its so hard to live with the uncertainty of having a child with a complex condition. I am here if you need to chat. Take care, big hugs xxx

thankyou :) tell me all about your little one!! i signed up on here not knowing if there would be any other parents of children with needs like harvey, glad ive found one! xx

Hi, its fab to have another member of the group. I you would like to chat anytime just send me a message. Take care and keep smiling x

my son harvey has a genetic, multi system condition called tuberous sclerosis. it has caused him to have brain tumours, sever epilepsy, west syndrome, heart tumours causing wolff-parkinson-white syndrome, global development delay, gastroeasophogal reflux, and possible autism. love him to pieces, he has taught me so much and altho he is in and out of hospital and is on a cocktail of drugs just to keep him alive he is the happiest little boy ive ever known, im so proud to be his mummy!