For the love of Lily | Action Medical Research

Touching Lives - October 2008

For the love of Lily

First time London to Paris participant Daniel James had a very special reason for getting involved.

His daughter Lily was born nine weeks prematurely in November 2007, suffering from an abdominal wall defect called exomphalos. This rare condition means that the muscle and skin of the abdomen fails to form properly during pregnancy and can leave internal organs exposed.

A scan early in the pregnancy had identified the problem, so Daniel and his partner Hannah, from Abingdon, Oxfordshire, were prepared for the huge battle they and Lily would face.

Lily was cared for in the special care baby unit at the John Radcliffe Hospital and had to undergo surgery in an attempt to repair the wall of her abdomen. She battled bravely against the odds, but sadly died in her mum and dad’s arms at just seven weeks old.

Daniel says, “We were overwhelmed by the determination she showed. She had a series of procedures and fought so bravely for several weeks, but we lost her. The condition affects around one in 5,000 pregnancies, but it is a congenital defect and no one can really say why it happened in our case.

“During the hours we spent reading about her condition I came across Action Medical Research. I found it incredibly moving to hear about its contribution to developing the use of ultrasound scanning. I also read about the Touching Tiny Lives appeal for premature babies and at that point committed to doing something to help.”

An occasional cyclist before, Daniel went into training in preparation for the London to Paris trip. He did the ride with a friend and between them they raised an incredible £7,500. Added to that was sponsorship money from some of Daniel’s colleagues at Vodafone, who did the Reading half marathon, and the final donation to Action Medical Research was £10,000.

Daniel and Hannah are expecting another baby in December. Doctors have been keeping a close eye on this pregnancy, but everything looks fine.

Daniel says, “After losing Lily, deciding to do the bike ride really gave me a point of focus. It was lovely riding through the French countryside in the sunshine and we arrived in Paris the day before the professionals rode in on the final stage of the Tour de France. I really enjoyed it and have already signed up for 2009.

“It means everything to me to know I have contributed to such an amazing campaign and I am so proud that we have been able to do something to commemorate Lily’s brief time with us.”

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