Don't want to say too much as I don't want to out them - I don't think she is on MN but still.
They found out this week that their 3 month old baby has a condition called Spinal Muscular Atrophy type 1. It is degenerative and the expected life span is a maximum of 2 years. There is no cure or treatment as far as I know.
As you can imagine they are absolutely heartbroken. My DP is with them today working on some building stuff with the father, in an attempt to try and 'do' something. I am going to visit them this evening. DP says that they are in a state of complete shock.
We visited when the baby was 3 days old, me and DP held her when she was a tiny newborn. It is absolutely devastating news
Does anyone have any experience of this condition?
And how on earth can I help the parents with this bloody awful news? I want to do as much as I can without being obtrusive.
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Friend's baby has been diagnosed with terminal genetic condition.
8 replies
GetOrfMoiCase · 11/05/2011 12:58
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