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lifes not fair - hand holding required

(33 Posts)
chocolatecakeystuff Wed 06-Feb-13 22:52:08

Am mummy to dd aged 8. Was born healthy, reached normal mile stones untill age 5/6. She started to wobble a little more than the other children, which got gradually worse.

Last may we were given the news that she has a degenerative neuro condition.

n she's no long able to walk, talk, eat properly at at times breath properly. Also affects all coordination & has a tremmor.
She has fits & can't see or hear very well. Also effected her memory & general understanding.

Having one of those days where id really like to burry my head in the sand. She's such a happy little thing & I know that should make it ok. And most of the time it does. Just having a wobble today. Wish it would all go away :-(

Homophone Thu 28-Feb-13 22:03:43

Sorry how shit. Hope you feel stronger soon.

minmooch Fri 01-Mar-13 06:52:03

How are you chocolate and your DD? Any news from the MRI?

Thinking of you xx

chocolatecakeystuff Fri 01-Mar-13 20:26:44

She seems a bit more like her usual chirpy self today.

Neuro called earlier to say mri shows as expected further degeneration in her cerebellum, so just the next stage of the illness taking hold. Have been referred to leicester for a gastronamy too before she's completly unable to eat.

But she's happy again today so I'm happy xx

minmooch Sat 02-Mar-13 06:52:59

Chocolate thank you for letting us know how your precious DD is. I'm sorry that the scan showed more degeneration - it is terribly distressing watching and knowing your child is deteriorating and there is nothing you can do.

I am so pleased to read that she is happier again - that must bring you some comfort.

Do you have good real life support? I find having an ill child so lonely - friends are amazing but it's hard to see and hear how their children are leading their normal, happy, healthy lives. (I have another son who is happy and healthy so that last sentence is hard for me to justify really).

I am thinking of you.

HollyMadison Sat 02-Mar-13 09:43:43

Sending you love and hugs from halfway round the world x

dikkertjedap Sat 02-Mar-13 09:54:07

chocolate I just read your thread. What a brilliant little girl your dd is and what a positive attitude she has!

Life is not fair.

I am so so sorry what your dd and you are going through.


chartreuse Sat 02-Mar-13 09:59:20

Sending lots of love and support to you and your lovely dd thanks

chocolatecakeystuff Sat 02-Mar-13 13:27:13

Thanks guys :-)
I have great support in rl from friends/ family, but minmooch I know exactly what you mean.

When everyone else comes away from parents evening grinning & proud of they're children I normally leave depressed & dread school report time knowing I'm only going to be told dd is behind the other children for eberything & hasn't hit any targets.
However all the teachers/ staff have a real soft spot for dd which is great.

She's a bit tired again today so were having a douvet day with some films & ice cream. :-D when I say we... I mean I, as dd fell asleep 10 minutes into the film haha

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