I knew from childhood in the thirties that I had inherited this strange disability from my mother and her family. It went back well into the last century obviously with its base in St. John's, Newfoundland whence the Lilly family came. My mother was virtually housebound for her last 20 years and my aunt for 40 years. Shoes and shame, debility and depression seem to be the hallmark of the trouble in our lives because no one seemed to understand the situation and thought we were bogus!

I was able to be a parish priest, and much else, until 1979 when I had to retire. I have worn calipers (braces) since 1982, can still drive my car, but can walk only a short distance. I attend church but have not for two years taken part in a service. It's not good for folk to have to fear a trip-up or fall!

I made a decision very early on that I would not marry; so the genetic problem ends with me. Distant cousins in Quebec and in St. John's Nfld. seem to be untouched. I am, literally, now the last of my name.

The medical world here knows little about the condition. My doctor in the sixties did a paper on it but my doctor since 1979 here is sympathetic, worried more about the diabetes I have developed than CMT. The doctor who sees me twice yearly in London is a fine and capable man. But we all have to learn how to live with it and live through it, one day at a time. It's a hard lesson and a lonely road, as you know.

Last year I wrote down the words that have been published as an autobiography – very little mention of "the trouble" rather a record of what can be achieved notwithstanding.

I came in touch last year, through BBC, again with a cousin I thought was dead - The Hon. Gordon Winter, lately Lieutenant-Governor of Newfoundland and chairman of The Winter Commission (a sad task) of which you may have read.

I am sure you are doing a great work for CMT. God grant you grace to continue in it.