Marco was born at 34 gestation, after what seemed to be a trouble free pregnancy.  At 27 weeks my membranes ruptured, and was told that delivery was probably imminent. This did not happen, but I was kept in hospital until delivery 7 weeks later. Throughout this time I had frequent scans, which showed everything to be normal.  Marco was 2 kilo's in weight.  The doctor told me he was in renal failure and they only expected him to survive 4 or 5 days.  On his second day they did a bone marrow sampling, as they thought there was something wrong.  This was confirmed the following day as 49xxxxy syndrome.  I was told that Marco would be severely mentally and physically handicapped, and "not to get too attached to him".  The hospital had never had a child with this condition, so it was left to us to find out as much as we could. We phoned Harvard University in the states, and were given a Dr Arthur Robinson's name in Colorado. We telephoned and spoke to his genetic counselor Mary Linden. We were overjoyed to hear that boys with this condition survive. She sent us lots of literature and told us not to be frightened of what we read. We photocopied everything and gave it to the hospital.  Because of this they discovered Marco had a cleft of the soft palate, which was repaired at 1 year old. He also had positional talipes which corrected with physiotherapy.  He was on oxygen therapy for the first 9 months of his life, due to severe oesophageal reflux, which resulted in 2 bouts of pneumonia. At 9 months a fundoplication was performed successfully and Marco was taken off oxygen.  His kidneys posed some problems. One did not develop and caused the medics some problems in whether to remove it or not.  They did this when Marco was 3 years old. No further problems on that score, although he did have kidney stones and reflux in the "good" kidney. So far this has improved. Marco has been fed all his life through a nasogastric tube.  This was replaced by a gastrostomy tube into his stomach last year. He is able to eat solids, but unable to drink enough fluids. He does not speak, but tries very hard. He communicates with Makaton. He understands everything you say to him. He started walking at 3 years old. In August 2002, Marco started school. This school is special needs and Marco loves it. He loves people and is very sociable. His school reports are glowing. Toilet training seems to be very difficult. Marco seems afraid of the toilet. We have bought child toilets, but he does not want to use them. He goes into the toilet with his cousins, grandpa etc, but is very apprehensive about using the toilet. He lets us know when he is filling his nappy but is unwilling to go to the toilet. Marco is a very happy and well adjusted boy. He does have temper tantrums, but doesn't every child ? We took him to Key Largo in Florida in 2000, for dolphin therapy, and feel that he came out his shell. He has has numerous visits to medics, to bring out the best, and we can honestly say that this has helped him. He is confident and happy. Five years ago when he was born, we didn't even think he would survive. I would like to let other parents and family know that if their son is diagnosed with this condition, never give up hope! Story Submitted by: angie.dom@virgin.net