STEVE:
Some of you know that my son is disabled, I thought that to avoid the need to repeat the story at the bogsmashers, which inevitably tends to depress me after a while, that I would like to tell his story here. I have never written it down, and it might help someone else somehow.

Thomas was born in Jan 1991, I was 32 and had spent most of my life chasing round the world building race cars. I was ready to settle down and was looking forward to starting a family, his mother was divorced and had two daughters from the previous marriage ( 8 and 10), The pregnancy was uneventful, the birth was exciting and in no time Thomas was born, when he was checked over the doctor said "that's unusual, he has a single palmar crease ( the two lines that cross the top of your hand were actually only one line) you normally only see that with Downs Syndrome" thinking nothing more of it than an oddity and thinking he must know what he was doing, we dismissed it, Thomas and mum came home after 2 days because she had already had 2 children, this was evening, we all went to bed very excited and got up, opened cards and presents, saw the midwife, who came early and settled down to attend to the glorious little bundle.

About mid morning it became obvious that something was amiss, Thomas was not eating , and felt quite cold, so I wrapped him up in a big blanket, it was wintertime after all, and proceeded to cuddle and rock him. He was lying across my lap with his head on my left side, I held his left hand which seemed to be warmer,so I was a bit less concerned. We decided to ring the midwife and ask her to come back to have another look at him just to be sure, and she said she would come after her rounds were finished.

Twenty minutes or so later Thomas seemed to get a lot worse and his colour went, I started to panic, reached inside his covers to check him and he was stone cold, I picked him up to my face to hear the last breath ooze out of him, he was dead. I stood there for what seemed like an eternity my mind racing, paralysed with fear and panic feeling all the time that the ground had gone from under me and that I was falling into a never ending pit, with nothing to stop me, still clinging to my son's body.

At that moment I was aware of Thomas's mother, still not knowing what had happened, answering the door, it was the midwife, she later said something had told her to come straight away, so she left her schedule and came back as soon as she could. I thrust Thomas into her arms praying that she could work some kind of miracle, she started mouth to mouth immediately, she had a trainee nurse with her, and the Round Table had just donated an oxygen cylinder for her to take on her rounds, which the trainee went to get while she continued recussitation on Thomas, breaking 2 of his ribs in the process ( the doctor at the hospital said to her "That's the least of his problems" when she reported the events to him). I called an ambulance and after a while went outside to recieve it as we lived in a remote area.I stood out on the road, wanting to go back to my son but not daring to leave that spot in case I missed them.

After what seemed like forever I caught sight of blue flashing lights in the distance, my heart soared as they approached, only to nose dive rapidly as I watched them turn around in a gateway and head back in the other direction. I couldn't get the car out as it was trapped in by the midwife's car but my old Bedford CF truck was parked in the orchard next door, after nearly flattening the battery it started, only to discover it was stuck in some mud, I drove forward and back like a madman trying to get out, eventually I dug ruts all the way to the road, and met the ambulance coming back the other way about a mile form my house, having turned around again. They followed me home and Thomas was loaded in, still being recussitated by the midwife. I held her up all the way to the hospital and she continued to keep him alive. He was taken to intensive care where a doctor had just come back from training in Great Ormond Street Hospital and he recognised the very rare disorder that had caused the failure and so knew how to deal with it.

Thomas has Di-George syndrome, caused by a chromosome deletion, it can cause many problems, some minor, some not, in this case it had caused a break in Thomas's main artery that feeds all the body with blood, it was broken after it feeds his head and his left arm, that is why that hand was still relatively warm, he wasn't getting blood to the rest of his body and he suffered kidney and liver failure as well, he also has a hole in the heart, He was rushed to GOSH and spent weeks in there after remedial surgery, he got brain damage during the episode due to oxygen starvation, which turned out to be not as bad as they had originally thought ( they did at one point suggest that we should pehaps not be "so aggressive in trying to keep him alive", as they thought he would probably be very bad) but fortune was on our side and he is much better than anyone expected, although he has severe learning difficulties and is autistic.

He is now 15, his mother left about 8 years ago, she struggles with an alcohol addiction that has been going on for years, she never sees him, which is probably best for him. He has recently developed a severe curvature of the spine and needs surgery which is very risky for him, he has arthritis in his hands and has recently started having seizures, so he doesn't seem to get a break.

Every night I put him to bed I close the door and wonder if he will still be here tomorrow, and sometimes I wonder if he would be better off if he wasn't.

Please don't think that you can't talk to me about this, I have learned to cope with it, and I think it is important people should know about this stuff.

Steve.