Would you want to know?

Kev is one of the bravest men I know.

As we started our relationship Kev’s family were given the devastating news that his mum had Huntington’s Disease.  They had no idea that this genetic disease was in the family or that any of his brothers, sister, uncles, aunts and cousins were at risk.  The gene for Huntington’s is a dominant gene, if you have the gene you will have the disease.  There is a 50/50 chance of passing the gene onto your children.  But in Kev’s family it is a late onset disease.

At the time his mum was diagnosed with symptoms, there was a test for the genetic marker for Huntington’s.  They had not yet found the gene. They had a large sample set from Kev’s family tree and so he could have the test to determine if he had the gene for Huntington’s Disease.

Fortunately, in Australia, they don’t just give you the test and leave you to your own devices.  There is a period of genetic counselling prior to the test and this continues for some time after you get the results.  You can begin the testing process but do not have to get your results right up until the point where they open the envelope.

So at 22, Kev found out that he had the gene marker for Huntington’s with a 99% certainty.  This was later confirmed when the gene for Huntington’s was discovered with a 99.99% certainty.  Nothing like statistically certainty to give you a reality check.

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Kev and Jen

At first Kev coped well but slowly he began what I consider to be a mourning process. This was one of the lowest points in our relationship, but as I like to focus on the positives, we came through it stronger as individuals and as a couple. He was determined to live his life and I was determined to live mine with him by my side.

Again, Kev is one of the bravest men I know.  He could have succumbed to the black dog chasing the heels of this type of diagnosis but he has fought it.  He could have made very different choices but he has refined what is most important to him.  He has developed relationships both casual and lasting by ensuring that those who meet him are happy, comfortable and at ease. This is his remarkable gift. Most people are unaware of how or why he does it. They are aware, however, that after time with Kev you feel good.  He has a sixth sense of knowing what is needed to smooth tensions and calm frayed nerves. He has an innate sense of fun and a child-like zeal for play that is infectious.

He has tried to teach this to me (not one of my strongest attributes – I’m the serious, insensitive one), our sons and the students he taught.  He calls it his life lessons. It is part of what made him a great teacher.

In hindsight, knowing Kev’s diagnosis has been a positive choice.  Would you want to know?


One thought on “Would you want to know?

  1. Pingback: What would change if you knew how you were going to die? | Kev, Me and HD

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