So life was kind of just bobbing along when unexpectedly at our recent neurology appointment our
consultant offered us the opportunity to take part in the recent clinical trials. All the science at this
point suggests that during this trial the results have managed to silence the Huntingtin protein with
good effect not only stopping the progression of HD but actually reversing the effects of this
mutant gene. My husband and I were totally blown away by the opportunity offered to us. A lumbar
puncture and a few blood tests wow – with the end result potentially being minimal to no HD – how amazing this could be.
The bloods and puncture have been taken and sent off to Boston for review to see if we are the
lucky ones whose specific criteria match the specific parameters for this particular trial. Again it's
around 50/50 chance of us being a match for treatment. I have not given myself time to consider the implications of this news as 50/50 has never
stacked in our favour before and generally stuff like this rarely happens to people like us. For us you
have to be in it to win it, however I am riding that wave of low expectation and plodding along just
wishing and hoping it lands on our door.
Our consultant is a wonderfully intelligent man and has made very clear we might not make the cut
but he was very kind to offer support of hope for HD in the future and its potential cure. Yet I can’t help
wondering if it’s too late this time for my husband but how wonderfully comforting this
would be for his asymptomatic brother in the future.
My husband on the other hand has been given a new beam of hope it feels like for the first time in a
long time. His apathy has begun to lift and the tonic of future hope has started to take hold.
I
can’t tell you how much this warms my heart. Despite the subtle personality changes and chronic
fatigue resulting in stumbling of words and social isolation coupled with chorea movement, luckily at
present I can still see that beautiful man I married. This has led him to believe that his life could
possibly now be his own again. He has ventured to believe he might have a chance to watch and feel
the joy of his daughter grow fully, finish school, get married, attend her wedding... the list is endless.
He has been given hope of a life we all take for granted and this by far for me is the most terrifying
part of our journey so far.
My fears lay in the intoxicating afterglow of built up expectation. Hope again on the toss of a coin
that may or may not go our way. I don’t want to dampen his spirit; I see myself as a realist. This may
not happen and I beg him not to build his hopes up. He tells me he knows, and then says "hey you
know, we could get rid of that walk-in shower and get that bath fitted babe if I get this treatment". I am terrified about having to deal with the fallout of such precarious hope, yet remain hopeful that I am
proved wrong. I hope, I wish and I pray for it to go our way for our family.
This blog post is dedicated to my mother who taught me to never give up hope and always dream big
#anythingispossiblejustkeepbelievingyoucan
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