27 April 2011


26 April 2011

Finally a social worker has called, and left a message. Maybe now,we may get some support. Im not sure if its because i requested a carers assesment,or kyrons lack of school attendance, or something else. What ever it is, I'll make sure they assess my housing needs as Daisy and us all cant go on like this. Daisys one now, she needs her own room to play, sleep, and grow, like any other child.

19 April 2011

The lady that wrote our story has called to say there has been national intrest in the story, so far I've had a guy call from London, whom i think is with some TV news, but im not sure what do??!!??

18 April 2011

Norwich mum speaks of baby daughter’s battle against rare condition - News - Norwich Advertiser

16 April 2011

 A lovely Journalist came round our house only yesterday, and we hit the front page news today!!..
   I'm so please Daisys needs are out in the open, this might make the council realise that by law,they have a duty to assist disabled children to live a healthy and safe life.
 I've begged the council and social services so much to help us, we are eligible for a disabled facility grant and in rare occasions it is given to children under 5, i would suggest this as a rare occasion. To phone constantly and arrange the assessment,beg,plead, and grovel for such support is ridiculous, and takes my attention of my role as a carer. All this has made me worry,depressed and ill. If something doesn't change soon, i don't know what I'll do. I'm worried sick, Daisy is now crawling and i can only pad and make safe so much of my house its silly, she needs her own space, as do my other children, and Mark and me. The other kids cant leave hard toys around they constantly have to clean, they rarely have friends round,that's not fair
r. Even Mark gets moaned at for leaving his mobile around,yer its great for Daisy to chew, but she also waves it around near her head, id never forgive myself if she donked her Skull-less part of her head.  Generally the grant is for mobility, in our case the grant is needed to assist Daisy to have mobility, if i cant make her surroundings safe for her, they i may as well give up now.
   Please show your support and write to the evening news about this story, I'm sure they will be happy to pass on your letters to the local council. thanks x

13 April 2011


Daisy is 1 year old today, I'm so happy for her. Wish i wasn't so stressed and tired, but for today nothing else matters, other than putting her Mookie Cow Trike together. It had to be the cow one, as its Dotty Daisy..

HaPpY bIrThDaY dOtTy DaIsY  Xx+Xx+

11 April 2011

European Journal of Human Genetics - Clinical and molecular analysis of nine families with Adams-Oliver syndrome

Autosomal recessive type of Adams–Oliver syndrome: prenatal diagnosis - Becker - 2002 - Ultrasound in Obstetrics and Gynecology - Wiley Online Library

Disease Information from NORD, National Organization for Rare Disorders, Inc.

Adams Oliver Syndrome - Rare But Devastating