August 30, 2008

Cause is Close to Mayor’s Heart

What was your first experience of cystic fibrosis?

I have two grandsons, now in their twenties, who were diagnosed at birth. It's a shock when you hear that news and you don't really know anything about the disease. When you are told, point-blank, they may not live beyond their teenage years, it's frightening. From the day it's diagnosed, you know you're living with a timebomb.

What do you now know about the disease?

It's a genetic condition which affects internal organs, especially the lungs, clogging them with mucus. The average life expectancy of someone with cystic fibrosis is around 30 years, although improvements in treatments mean people can live longer. For someone to go through their whole lives knowing they will die prematurely: that's the thing. It affects different people in different ways. One of the boys has it more severely than the other and has been going to hospital regularly for drug treatment and physiotherapy to clear his lungs. The other goes two or three times a year.

Is there a cure?

Not at the moment. The condition is treated with physiotherapy, exercise and various different drugs to clear mucus and fight infections.

How many people have cystic fibrosis in Plymouth?

On average, there are two new cases diagnosed each year in the city area. There are 30 children and 30 adults who are receiving ongoing treatment at Derriford Hospital at the moment. They're among 8,000 people with the disease in the UK.

What impact has the condition had on your family's lives?

It deeply affects every family which has children with the illness. Those with the disease have to take priority over others within the family unit because we have to make sure they are getting all the attention and medication needed. It becomes a way of life. The boys know the full facts and are extremely brave. They cope, or appear to cope, better than other family members. To see my grandsons, you wouldn't think they had it. They try to put a lot of it to one side and get on with their lives.

What have your experiences of local services been like?

The doctors and staff at the paediatric and respiratory units at Derriford Hospital have been fantastic. My grandson has admitted himself at different times through the night and the care has been excellent. I've visited hospital and seen other people there who are really ill with the disease; you really feel for what these young people go through.

Which cause have you chosen as this year's Lord Mayor's charity?

The national Cystic Fibrosis Trust, as well as the Cystic Fibrosis trust fund within Plymouth Hospitals NHS Trust. The local trust is one of the least well-supported of funds within the hospital because it's not very well known. It does valuable work, such as setting up a website to enable children with the disease to socialise online. We all know about mainstream charities for heart disease and cancer, but I wanted to raise awareness of a lesser- known cause: one that has affected those close to me.

How are you raising money?

It kicked off on my inauguration day in May. I had an envelope on the table and we raised pounds500. So far these have included a 'body combat' fitness event held at Plymouth's Guildhall on Wednesday night. About 45 people turned up and we raised pounds250. I've also had private donations. Stitches, the tailor in Lanhydrock Road, St Judes, has given us pounds300. Now we're trying to organise as many community events as we can. In the new year we hope to hold a children's charity football event in Plymouth with the Devon Minor League. I'm ready to beg, steal and borrow to make sure these events are free and the only thing to give money to will be the charity.

What else are you doing to engage with local services?

I'm visiting Derriford Hospital in September to tour facilities provided for people with cystic fibrosis to see how the transition from adolescent to adult care is managed. It's a difficult time. When they're younger, parents have more control over their treatment and when medication is given. As they get older they want to lead a normal life and often try to put it to the backs of their minds.

How much do you hope to raise?

I haven't set a target because I don't want to disappoint anyone. I'll be happy with whatever we get.

How can people support your chosen charities?

They can make a donation by making out a cheque to The Lord Mayor's Charity and sending it to the Lord Mayor, Plymouth City Council Chambers, Armada Way, Plymouth. I'm interested in keeping support going beyond the year as well. If anyone's interested in helping with events, or setting up their own, they only have to contact me. Call Plymouth City Council on 01752 304136.

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