On 4th December 2011, after an emergency c-section, my beautiful baby boy, James was born.  Unfortunately, James didn't come out kicking and crying and wasn't passed to us as you would expect but had to be resucitated and taken immediately to the Neo-natal intensive care unit.  I didn't get to see my little lad for 12 hours after he was born and when I did eventually get taken to him, I could only look at him laying in an incubator with what looked like hundreds of wires attached to him, being fed via a nasal tube.  Not the idyllic mother and baby bonding moment you dream of.  Apart from low blood sugar levels, the doctors were baffled as to what had happened and over the next few weeks James had every different test you can imagine, MRI scan, ultrasound, ECG, EEG, X-rays and every day more blood tests than you can imagine, causing massive bruising to his feet.  James was still very floppy, unable to suck and barely woke up.  Even bottle feeding was a massive struggle and his weight gain was non-existent.  With a diagnosis eluding the doctors and as he was stable, we were allowed to take him home.  Over the next few months we were back and forth to hospital as he kept suffering from chest infections and was still incredibly quiet.  Nothing seemed to wake him and he was not gaining weight as he was struggling to feed.  Changes to his milk and additional medication seemed to assist him but still his motor development was not progressing and he was still very crunched up like a newborn baby, his movement very limited.  As you can imagine we were besides ourselves with worry  - what would the future hold for our precious baby?  The consultant at our local hospital belived he may have a metabolic disorder of the central nervous system along with neurological problems and arranged for us to be transferred to the Evelina Children's Hospital at Waterloo.  By this time, James had started to progress and thanks to his physio he had started to be able to move his head and open out his hands and arms.  A massive leap forward for him even if he wasn't meeting the usual milestones.  His feeding was also taking off and he began to smile.  
 
The first time we met the team at Evelina, we felt hopeful for the future.  The doctors were brilliant.  Gurus, in fact.  They explained to us perfectly what they were testing for, how the tests worked and how they would go to the ends of the earth for a diagnosis.  If no diagnosis was forthcoming they reassured us that they would do everything possible to give the best support to James and ourselves to help his development and lead as normal a life as possible.  The next time we went to Evelina, we were being seen by the Speech and language therapists to try and get to the bottom of the persistent feeding issues James had.  They performed a Video Fluoroscopy, explained exactly what was happening and I was able to see myself precisely why James had been suffering from recurrent chest infections.  He had been swallowing some of his milk directly to his lungs.  Luckily he seemed to be able to cope with this due to the added medication to his milk.  On this occasion we were actually on the metabolic and neurological ward and it made me realise that there were so many who are far worse off than us.  The children on this ward have heartbreaking, life threatening conditions.  However, the fantastic work of the team there provides hope for their futures.  We are currently awaiting confirmation of a rare genetic overgrowth syndrome for James but he is progressing and I am confident that with the help of the team at Evelina we can provide James with the best quality of life possible.  My heartfelt thanks go out to the team looking after him. 
 
On 28th October 2012 we shall be running the Great South Run in aid of 'Together we can', helping to raise money for the Evelina Children's Hospital.  We really appreciate any support for this fantastic cause but pray you never require its assistance....