Dad with his two beautiful boys back in the late ’70s judging by those sideburns!

I’ve written a lot about Andy and because he died so young from VHL, I think his story is particularly moving.  But he wasn’t the only one in the family with VHL.  Although it is rare (1 in 36000), because it is genetic, when it hits one person in a family, it’s likely to affect others too.  And in our case, it was Dad.  In fact, Dad had it first.

Dad and Andy

A successful building society manager, member of the Round Table, active in the community, and with two wonderful little boys (!), Dad collapsed in his late thirties when I was about 6 years old.  They found a tumour in his brain the size of an egg which later turned out to be one of many, a symptom of Von Hippel Lindau disease.

Dad and Andy in more recent years

My memories of Dad before he was ill are few and far between.  Instead, etched in my memory are the fear I felt when I saw him having a fit at the top of the stairs, or another time I found him lying on the kitchen floor, or when he passed out over lunch in Swiss Cottage in Leicester.  I remember how uncomfortable I felt visiting him at Addenbrookes when I couldn’t understand what he was saying, and I remember the painstaking slow process of speech therapy, the endless repetition of ‘The man walked up the hill slowly’!

For many years, sadly, Dad was something of a stranger to me, not least when he went to live with his mum, my grandmother, in Wisbech and the occasional visits felt like going to see a very elderly relative.  We dressed smartly and were on our best behaviour while Dad sat in his chair smoking his pipe and we drank tea out of Gran’s flowery bone china cups and admired her doilies or talked to the budgie!

But life changes, and as we grew up, we got to know him better.  He married again and that gave him a new lease of life and energy.  Despite the constant appointments and operations that he too had to endure, he was a determined and positive person, always keen to talk to anyone who would listen!

Dad with his wife Wendy and a rather tired and grumpy Hilary after her baptism in 2008

We grew much closer in later years, and although I couldn’t share in his experience of VHL (or his love of snooker or cars for that matter!), when I was diagnosed with Type 1 diabetes, there was something we could share.  We would bore everyone else by comparing blood sugar readings, changes in treatment and carb counting.  Dad was fascinated by the flexibility I had with my pump, while he would still insist that he couldn’t have any sweet desserts and complained when the menu didn’t offer cheese and biscuits!

In fact, Dad said it wasn’t the VHL that annoyed him, it was the diabetes that he found much harder to live with and caused him more angst on a day to day basis.  In fact, it wasn’t even the VHL that caused his death in August 2013 but a heart attack while recovering from his latest brain operation.

As a boy, it was common for people to say I was like my dad, while Andy was more like my mum.  Of course, the reality is we are much more of a mixture of our parents’ genes and uniquely ourselves too.  But I am proud to be told I am like my dad now, complete with the terrible jokes that make my daughters cringe.  My dad, Michael Smith, was a remarkable man, who taught me above all what it means for God to turn our weakness into His strength.




Author: walk4andy

I am a (just!) 40 year old vicar in Leicester. My brother Andy Lees died in 2013 aged 38 just three months after my father. They both suffered from Von Hippel Lindau syndrome, a genetic form of cancer. This May I am walking Hadrian's Wall to raise money for VHL UK/Ireland.

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