Ally Cadence Trust for Spinal Muscular Atrophy
0800 23 43 762
0333 44 43 762
" Supporting families affected
  by SMA Type 1 "
" Supporting families affected
  by SMA Type 1 "
0800 23 43 762
0333 44 43 762
0800 23 43 762
0333 44 43 762
" Supporting families affected by SMA Type 1 "

Blog - 2531 Days Later

ACT for SMA Butterfly Logo

It's been 2,531 days (the equivalent of 60,744 hours or 3,644,640 minutes) since we said goodbye to Ally.

Compare that to the short 190 days that she was here and it really does feel like a lifetime ago.

We've been sat this afternoon looking through the footage that Martin at Focused Productions has taken during the week and it has been extremely touching, and surprisingly difficult, to watch some bits.

Listening to families talking about their experience can take us right back to our own, all them 2,531 days ago. This is something we don't often let ourselves think too much about. We tell our "story" and some days it feels that is all it is. We talk about our experience as if it was in another lifetime. The days we truly let ourselves relive that "story" it can be difficult, after all this is a journey we will walk forever.

However our story, and our experience are the very reasons we are here today. When we visit a family and say "we know how you feel" we really do. When we give them advice on things to do and places to go its because we don't want them living with some of the few regrets we may have.

We learnt this week that the nurse present when we received Ally's diagnosis, who also cared for her during her many stays at Lincoln County Hospital, is now caring for a child we are helping in another area. It feels like we have gone in a huge circle and gives a great sense of pride, along with the happy feelings that Ally is still not forgotten by those that cared for her.

Life is very precious. We only had 6 months and 9 days together but we would, without a doubt, do it all over again just to see Ally's beautiful smile. heart emoticon

Tags: ReflectionDiagnosisFilming
Author: Emma Humphries
21 February 2016
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