Anyone else's child terminally ill?

[1980mamma]

Hi
My 6 month old beauty is terminally ill with SMA type 1. Anyone else out there trying to cope with this at the moment?
I posted a thread about SMA but no replies, but wondering if anyone out there facing losing their child?
We are trying and mostly succeeding to focus on the joy and beauty of our gorgeous baby. It's obviously devastating and terrifying at the same time.
Our baby boy was diagnosed at 3 months and is now tube fed. His care is extremely intensive. Luckily my husband is off work as its a 2 man job really.
I have noticed threads for bereaved parents but can't find any for parents with terminally ill children, unless I'm looking in wrong bit?
Thanks in advance

[Kanga59]

She is the bomb so hopefully it's not mitochondrial then and I'm sure she will help you get to the bottom of it. did she enrol you in the genome project? I hope you get some answers. its a minefield

[BathshebaDarkstone]

My DS1 is 25 and has CF. His prognosis was 15 - 30 years, so we feel incredibly lucky to still have him in our lives. It's horrible isn't it, you know they're going to die before you, but you don't know when. Very un-Mumsnetty hugs to you.

[JellyBaby26]

she is going to see what the board say i believe. They will take some convincing as her results are so normal. Hopefully will be a little clearer when the letter from the appointment comes through.

Its very often very difficult to remember what they have said when you get home.