Monday, 20 February 2012

Kind hearts and consciences

A quick snapshot of what Aila and I did this morning... We were actually up at East Surrey hospital so that Aila could have her blood pressure monitored whilst they found out whether she would tolerate a certain heart medication (unfortunately the results weren't hopeful), but we had to pass the time somehow and once Aila had got over a dizzy patch we discovered that you're never too old to enjoy a wall-mounted Duplo board.  What you see here is my portrait, the extra-clever bit being of course that the initials are both that of the subject (me) and the artist (Aila).  I created a superb dog picture myself, but failed to digitally immortalise it!

With all the controversy going on at the moment surrounding the NHS and various reports being circulated about standards of care, I thought I'd just stick my head above the parapet and pay tribute to all the many wonderful medical professionals who have dealt with us since Aila's diagnosis two years ago.  A big huge THANK YOU to you all, for making a difficult situation that bit easier to cope with. We have met with loads of care and kindness and this morning was no exception; the cheery nurse had plenty to do hooking Aila up to an exceedingly beepy monitoring machine at 15 minute intervals but still kept us plied generously with toast, tea and blankets.  (I would like to include Aila's hospital lunch in this tribute but alas that would be pushing things.  It was nice that she was offered one though and I can honestly say I've never tasted custard like that before!)

In the midst of all this generous care, though, I do have a dilemma.  I guess it's just part of living in a world whose heart, though often kind, doesn't always beat to the same rhythm as that of a Christian pro-lifer.  It would be so easy if the world really were divided into clear "pro-life: good" and "anti-life:evil" camps but of course it just ain't like that.  Differing worldviews and ethics can be married to differing motives in a bewildering variety of well- and not-so-well-meaning combinations, until one ends up finding oneself in the position of the Biblical farmer who was in danger of pulling up his wheat whilst trying to weed out the darnel.

My own wheat-and-darnel dilemma concerns a smallish but excellent charity, the only one I know of set up to specifically help patients with Aila's and similar conditions.  We are members of this charity; I have spoken to its representatives on the 'phone, as have others on my behalf, and found them very helpful and friendly; it does a lot of good work both in the practical support of sufferers and in funding medical research into their conditions.  The trouble is, of course, that this charity - like so many other medical charities - belongs to an umbrella organisation, the Association of Medical Research Charities (AMRC), which supports embryonic stem cell research and pre-implantation genetic selection of embryos (in IVF).  I have emailed the charity to ask what their own stance is and whether they in fact support medical research of this type - from following their website and members' newsletters I have not noticed any embryonic stem cell research projects, but that doesn't mean that none are, have been or could be funded by them.  Unfortunately I have not yet had a reply.

I have noticed several excellent projects that they support. In the case of Friedreich's Ataxia in particular, there seems to be a lot of very hopeful research going on and I would like to donate towards it as and when I am able.  I just don't know how to do that without quite possibly inadvertently funding projects that do not accord with my conscience.  And I don't want to not fund the "good" research, because every day I see my daughter struggling with her condition and I would move mountains to help her if I could.

My worst nightmare of course is that a treatment which dramatically alleviates or reverses the damage done by the disease will be developed, but using a technique which I cannot in conscience accept.  I cannot imagine anything more heart-rending and soul-ravaging than watching your child deteriorate with a curable condition.  If the illness were mine, the choice would be easy - I would suffer and if necessary die rather than use the treatment.  But it is not mine; I only wish it were.

By the time anything like a cure might be on the horizon, the choice of whether to take it up will be my daughter's as an adult, not mine, though that is cold comfort.  I can only hope and pray that it will be a choice between equally ethical alternatives.  In the meantime, given that I do not know of any specifically "pro-life" institute devoted to researching into conditions like Aila's, my dilemma continues.  How do I support the wheat of those ethical alternatives whilst making sure I am not also feeding the darnel of embryo research?  In this complicated, topsy-turvy world where the sun shines on the good, bad and well-meaning alike, can I?


  1. Amazing post. It would be wonderful if umbilical cord cell research progresses. We are seriously considering donating at the birth. Virgin give us a chance to save some for our own use should we require it and give some to a community "bank". I pray that the uses would open up possibiities for you and your daughter.

  2. Thanks for your prayers, Bump Beyond. I'd say go for it with the umbilical cord cell donation! - you're right, there are wonderful, ethical possibilities in that area which the generosity of parents like yourselves can help to further... Let's hope your little one never needs it, but good to have it there in case. God bless.

  3. A lovely post that brought tears to my eyes!
    We are all broken and struggling and sometimes everything looks another shade of grey...

  4. Thank you Amanda. Yes we all have our struggles, but the blessing is that God has given us each other, the members of our families and communities, to support us through. "Aila's Fund" and the kindness we have been shown as we launch it (not least by you and your already busy family) has really brought that home to me. I only hope God shows me ways to give a bit of that kindness back.

  5. (Thanks for the comment on Bump. I have to say that the Finnish Lentern cakes are the most delicious things Ive eaten in a long while.Hope I got the recipe right!? Ny husband will be lucky of he finds any left tonight. Now looking forward to Lent. Will keep you in our prayers throughout)

    1. I've never eaten those particular buns (though then I've never happened to be visiting Finland in Lent) but with the cardamon, vanilla and berries it looks right - typical Finnish ingredients - I could eat cardamon-flavoured sweet bread (pulla) till it comes out of my ears. In fact I'm surprised it never has given the amounts I've put away in the past. Many prayers for you and yours too.