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I have just been to Keir's funeral. There is little sadder than a child's funeral and I seldom go but I have looked after Keir for 9 years and it was the right thing to do this time. Keir had metachromatic leukodystrophy, initially diagnosed as Charcot Marie Tooth disease, until he lost his speech and mobility over a few months when he was five. Please see ‘For our boy’ by Michelle Tonge below.
I remember the first time I saw him, a bright little boy hooked on The Incredibles, and the last time I saw him peaceful and calm, having died a quiet death at home with his devoted family around him. In the intervening years, I saw him at home every 2 months, sometimes more often if needed. I got to know his parents, sister, grandad and all the carers, nurses, therapists and hospice staff trooping in and out of the house in a quiet cul-de-sac in the north of Bolton.
I first arrived at the family home armed with my sketchy knowledge of this rare condition and my draft Personal Resuscitation Plan. I talked earnestly to Keir's parents and filled in the plan—it was a long time before we needed it! I look back and think I was too forward with discussing end of life when there were no signs of it and I should have given the family more space without having to face such issues. However, another part of me reflects that laying that honest foundation gave a focus and reality to all our discussions since.
To be truthful, my two monthly visits were usually spent just chatting, often about what I was up to. Usually I left with a joke and a laugh. Keir was very stable for ages. We would …