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Joseph's story

In 2008 we had the happy news that I was pregnant again and were very surprised to discover that it was a boy (no one in my family has boys!) but there was more news to follow: our baby had a large gap in his oesophagus (long gap oesophageal atresia) and potentially other health problems too.

Joseph was delivered on Friday the 13th at Leicester and, after his first operation to put a feeding tube into his tummy, he was transferred to the neonatal unit at Walsgrave (or University Hospital as it is now named) where he was to spend three months doing nothing but eating and growing. He was attached to all sorts of machines and was fed through a Mickey button into his stomach.

Joseph being Joseph however, he did not take the easy route – he caught infections, repeatedly stopped breathing and his tubes kept falling out. The hope was that after three months his oesophagus would have grown along with the rest of his anatomy, making it easier to find a permanent solution. After three months we were transferred back to Leicester for Joseph's big operation to find this solution.

I have never forgotten that morning, when I could not wash his sleep suit because it smelt of him, when I had to leave him asleep on an operating table in a room the size of a small restaurant with all the different medical teams getting ready in their different areas. After seven hours we had a phone call to say that we had had a miracle and they had managed to join his oesophagus together.

In the first year we had over ten operations to reopen the join when it collapsed and there have been a few operations since then!

Joseph is now nearly three and doing very well but has changed our life more than most babies! Our experience has taught us that we cannot control everything and that we are hugely fortunate that Joseph was born now in the UK, not 20 years ago when the techniques were not available. We have had a rocky ride but we did finally leave hospital with our baby – not all families we met were so lucky.

I feel very passionately that things sometimes happen for a reason and I now want to do everything in my power to help other families come home with their babies. I believe the best way of doing this is by investing in research into new treatments and ways of doing things, and by working with all those fantastic medics who cared for Joseph and who need the funds to do the research to help more babies in the future.

After we left hospital, I met a lady called Tracy Hayes who had had a very premature baby who had unfortunately died when she was ten months old. Tracy told me she had set up the Grace Research Fund in memory of her daughter.

My husband and I decided that we could never thank the nurses and doctors in Coventry and Leicester enough, and that the best thing we could do was to support the Grace Research Fund to help families in the future by improving the care and treatment of premature and ill babies. Since we became involved we have taken part in the 'Big Push' – pushing a trolley from Kenilworth Castle to University Hospital dressed as characters from Toy Story! We have taken friends to the annual dinner and this year we have taken on the mantle of organising the annual ball.

I would love to hear from anyone who would like to get involved in the Grace Research Fund by sharing their story, by running the Great North Run for us, by coming to our annual ball, organising a wine tasting or any other event, or by helping us in any other way to thank the medics in our area for looking after the most vulnerable babies so fantastically.