Always there

It’s not just close family and friends that help people with chronic illnesses like cystic fibrosis (CF)*. The recent death of one of my unsung heroes reinforced this…

I received a text from my mum a few weeks ago breaking the sad news that Ken Lacey had died aged 92. Ken and his wife Betty, who survives him, were like pseudo grandparents to me.

We’ve known Ken and Betty Lacey all our lives and there’s a good reason for that. They tragically lost their CF son – their only child – Peter in 1974, aged only 24. Back then this was an unexpected age to reach considering the life expectancy of CF sufferers. As context, when I was born in 1971, I wasn’t expected to live much beyond 17…

Ken and Betty were realistic about Peter’s chances but realised that he shouldn’t be wrapped up in cotton wool. Instead he was encouraged to make the most of what life he was likely to have. When he was in his early twenties he bought a hearse car along with some college friends and they drove it on the Continent and had a wonderful time. The irony of driving around in a funeral car is certainly not lost on me.

Peter was very artistic and attended Art College and his paintings were shrined on the walls and cabinets of Betty and Ken’s homes. Those paintings were always there to remind them.

Peter was treated at Great Ormond Street Hospital (GOSH) in London, curiously at the same time that my mum was being trained there as a nurse, though we don’t think their paths crossed. He also was an inpatient at Tadworth Court, the country branch of GOSH. My mum trained there as well.

My parents met Ken and Betty at a local Hampshire CF meeting in May 1972 when Betty was the Secretary and Ken the Treasurer, positions they held for a while before my mum took up the post of Honorary Secretary in 1975.
In 1982 Ken and mum even went to Claridges, London, to meet HRH Princess Alexandra who was and still is, the CF Trust Patron.

They were a key part of the Hampshire CF fundraising committee and attendees at a plethora of events, often organised by my parents. From CF stalls at the Southampton Show, the balloon festival, tennis clubhouses, people’s homes and gardens, Ken and Betty were omnipresent. Ken took people’s entrance money at many of these events; a mantle that was passed to my dad overtime before his heart breaking demise due to Motor Neurone Disease just over a year ago. Betty would help out with the ‘bring and buy’ stall or serve refreshments.

In fact for over 30 years they were for many people synonymous with CF fundraising in Hampshire. They could have dipped out following the death of their son but they stayed loyal and dependable. I was always there and so were they.
So when that text came through and I read that one of my biggest supporters had perished, I did feel terribly upset, even though his failing health meant I hadn’t seen him in a few years. As a father myself I pondered on how rough it would have been for them to lose their one and only child at such an early age and that being that.

I believe that they viewed me as a pseudo grandson, making frequent visits to our house and always remembering my birthdays. They were extremely thrilled when I married Katie and when we had our son Felix. They must have felt pride and joy in all my life achievements and milestones. But that must have been twinned with gut-wrenching pangs of grief for their own boy who didn’t live nearly long enough to work full time, buy a house, marry or have children.

At 24 I was not long out of University, getting into work, playing my hockey and having more fun than is reasonably possible. I cannot conceive how awful it would have been for them to lose Peter at such a fledgling age.

Peter, who I never formally knew, is one of many sadly deceased CF sufferers who are hard-wired into my conscience, binding my soul with the fortitude and hope to carry on with my relentless fight for survival.

They lost their boy but found another one to make a difference for. I was always there to remind Ken and Betty of the cherished son they had and they were always there as extra grandparents for me and as willing helpers to raise money to treat my illness. I will always be grateful for their care and devotion. Love always…

I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 9,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.