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Metabolic/Mitohondrial disorders

(3 Posts)
JellyBaby26 Mon 14-Sep-15 16:53:46

Feeling very alone as my daughter has such an unknown condition.

She was born in May and immediately presented with seizures and was in intensive care for 2 weeks. she had MRI scans, ultrasounds, lumbar punctures, blood tests, urine tests, muscle biopsies etc etc.

So far everything has come back normal. They are now testing nuclear and maternal DNA.

Its been 16 weeks and am so grateful for the time we have had with her as they never expected her to breathe for herself and come home and we were talking funerals etc. However DH and I are desperate for another baby ASAP as i just don't know how ill cope when she dies, and becoming a mum and pushing a baby out was the best thing that ever happened to me (for a few hours anyway).

Does anyone have any experience of these horrible conditions? Would be nice to speak to others in the same boat as it seems they are few and far between.

EldonAve Mon 14-Sep-15 21:20:52

Sorry to hear you are having such a tough time
The Lily Foundation may be able to help

www.thelilyfoundation.org.uk/family-support/

Kanga59 Sat 24-Oct-15 21:24:37

How is your daughter doing jelly baby? x

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