Family struggle inspires fundraising success | Action Medical Research

Touching Lives - November 2007

Family struggle inspires fundraising success

In spring 2006, Phil Taylor was busy juggling his work as an IT consultant for a major bank and fitting in training for the Action Medical Research London to Paris bike ride that summer. Life was rosy for his young family — Phil’s wife Ann worked in an accounts department, and they were also kept busy by their two daughters, Amy (9) and Emma (7). Though now a perfectly healthy child, Emma was born 5 weeks prematurely, and, partly as a result of his family’s experience of the worry of having a baby born too soon, Phil was keen to complete the London to Paris bike ride and raise money for our appeal.

“I think it’s very important to give every child the chance of a healthy life, and Touching Tiny Lives is a cause that hits the nail on the head for me”, he reflects on his decision to support the Charity.

With five months hard training under his belt, Phil was feeling confident about the ride. However, with just three weeks to go, Ann suddenly fell ill with suspected food poisoning.Their house was pretty full at the time with two friends of Amy and Emma staying for a sleepover, and the family enjoyed a Chinese takeaway that evening before retiring to bed. Early in the morning, Ann awoke suffering from stomach pain and vomiting, and a doctor was called to the house. When her condition worsened later, another doctor was called, and Ann was rushed to hospital while Phil was left to manage getting his daughters’ friends safely back to their homes and then arranging temporary care of his own children with friends and relatives.

Ann was initially diagnosed with septicaemia and e-coli poisoning, and was given antibiotics and also fluids to rehydrate her. Her doctors considered operating to investigate the cause, but decided against it after her condition improved a little. Ann remained in hospital for a further 12 days while undergoing tests, until finally the family were informed that Crohn’s disease was to blame.

Ann picks up the story at this point. “When they finally said it was Crohn’s disease, I sat and cried for hours. I was frightened and had no idea what to expect. Phil brought in some information on the disease that he’d gleaned from an internet search, but I was scared at the thought of what the future held. When I came home and started talking to others though, I realised I wasn’t alone and the disease affects many people.”

Ann returned home finally, but a week later she was called back to hospital by her consultant, for surgery to remove part of her inflammed bowel.The operation was a success and she came home to recuperate. Unfortunately though, while surgery can help, it is not a cure for the disease, and symptoms returned within eight weeks of the operation. Now, over a year later, although Ann has been prescribed a number of steroid drugs to try and bring her symptoms under control, they continue to affect her daily life to a large extent. She explains, “Crohn’s disease has had a massive effect on my life. I have been pretty much housebound all this time, as I’ve been too scared to go out in case I lose control of my bowels. I haven’t even been able to take my children to school in the mornings, and I’ve had panic attacks too which don’t help. It’s now 14 months since my diagnosis and although things are getting slightly easier, I am desperate to resume work and normal family life.”

Witnessing his wife’s continuing struggle with this most debilitating condition made Phil all the more determined to complete the London to Paris bike ride and raise money for our medical research. And this year, he was able to resume his training, and in July triumphantly crossed the finish line at the Eiffel Tower after 300 miles and four long days on his bike. As well as raising a magnificent £2,100 to help in the fight against conditions like Crohn’s disease, Phil found a great sense of achievement in being one of the 450 Action Medical Research riders to complete the fundraising ride for the Charity. As he says, “The London to Paris bike ride wasn’t easy, but it was extremely fulfilling. It is an experience I will never forget, especially the final day with the ride into central Paris. I would recommend it to anyone who’s considering giving it a go.”

As well as managing a demanding job and raising funds for Action Medical Research, Phil has provided unwavering support in helping his family cope with the effects of Ann’s disease. “Phil has been a great support emotionally, physically and practically to me and our girls,” says Ann. Her daughters too, despite their young age, have helped look after their mum.”Amy, who is now ten, and Emma, eight, have been absolute gems,” she says. “They have supported me through all the highs and lows, and though they have found it tough, they haven’t let it interfere with their school work.There have been many occasions when I just sit and cry and they rally round and say ‘come on mum, it’ll be ok soon’.

“Crohn’s disease is a hard condition to live with, but once it’s in remission I’m told you can lead a normal life. I’m just focusing now on looking forward to that time. My family, especially my mum and sister, have been such a support. Thank you to all of them.” TL

Research into debilitating diseases

Crohn’s disease and ulcerative colitis are inflammatory bowel diseases (IBDs), which are estimated to affect around one in 400 people in the UK. These are lifelong conditions, which are painful and debilitating. Crohn’s disease has no known cure. Symptoms of IBD include diarrhoea and abdominal pain, obstruction and ulceration of the bowel and weight loss, and these can be particularly severe in young people. Many areas of a sufferer’s life can be affected, including education, employment and psychological well-being. Research into the causes of IBD has shown that both inherited and environmental factors are likely to be involved, and a better understanding of the interplay between these factors could potentially lead to better treatment options.We are currently funding a study in Scotland into genes which may determine susceptibility, severity and age of onset of IBD (part-funded by the Miss Hazel M Wood Charitable Trust and The Gay Ramsay-Steel-Maitland or Stafford Trust). Another group of Action Medical Researchers at the University of Leeds (generously funded by The Henry Smith Charity) are investigating a group of specialised immune cells called dendritic cells, and have shown how these cells accumulate in the diseased bowel, which may be caused by over production of a particular substance in the body.They aim to determine how these dendritic cells work, which will hopefully lead to improved understanding and thus better treatment of these devastating conditions in the future. Also, the Charity has recently awarded a Research Training Fellowship to Dr Rachel Cooney, who is analysing DNA from Crohn’s disease sufferers and comparing it with that of ulcerative colitis patients and a group of healthy volunteers (see page 13 for further details of this grant).

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