WORST NEWS EVER!!!!!!!!!!!

[Guest guest]

Hi All,

and I got a call from Great Ormond Street to go down on Friday because

they had found something abnormal in one of 's blood samples.

( is Twelve weeks with BPP)

We meet with his Neurologist who tells us has something called a Peroxisome

disorder which affects the fatty acids in his body and would have caused his

Polymicrogyria whilst growing in the womb. But then the bad news came.

This condition is untreatable and will mean he will not live out of childhood

and because he has severe Epilepsy and breathing difficulties they seemed to

think it would be sooner rather than later.

I'm not sure how any Mother is supposed to cope with this news. But i am doing

so very badly.

We haven't gotten to know each other yet and I'm having to think about burying

him!!!

The hardest part is not knowing how long it could be tomorrow next week, next

year or in ten years i feel like I'm on death row just waiting for that day to

come.

T he docs said that if the Epilepsy didn't cause his death then he would

probably get a chest infection that he was to weak to fight. And because he's so

vulnerable even a cold turns into a major illness.

I love him with all my heart and am so angry that this is happening to my

family.

Thank you all for listening

and (The most beautiful boy in the world)