Part of my blog for The Justice Gap

http://thejusticegap.com/News/a-bitter-pill-the-epilim-familes-fight-for-justice/

Above is a link that explains how all the children affected by FACS SYNDROME (at the time 6 years ago) tried to take the drug company who make Epilim to court.  This case would have been very successful.  The amount of evidence our solicitors had was overwhelming.  When you read more of the blog, you will realise why I am not only adament with raising awareness of FACS, but also the injustice that all the children affected by the medication have been put through.  Two weeks before trial at the High Courts in London and the case was plugged after such an amount of money wasted.  At the moment with todays economic crisis and Britain being in a recession, why are we in such a mess??? The Government wasting that amount of money is part of the reason, and this is just with one case.  How much more of peoples and taxpayers money are they wasting???? I could give a huge list, but will keep shut……for now.

MUM, WHY AM I DISABLED????

Just had a heartbreaking talk with Lauren.  As shes now 7 shes realizing she cant walk properly.  She just said “mum why am I disabled”  How do you answer your child that??? Being a mum I find the emotional side overpowering.  Lauren knows she has Cerebral Palsy and FACS as when she meets people its the 1st thing she tells  them.  I approached it by saying that when she was in my tummy she wanted to see mummy and daddy so much that she decided to make an early appearance.  She was born at 31 weeks so was very premature, she was so poorly that she was given a blessing from a priest in the baby unit.As we were talking she said “I want my legs to work” shes such a determined little girl and quite independant. I explained to her that I to had a disability ie Epilepsy and she said “awwww mum so were matching” An advert then came on the tv at that point singing “happy feet”, she then said “my feet arent happy” Tears were then in my eyes and she said I want to be normal and run like my friends”

It makes me so so angry….the Government are aware of this condition and always have been.  Is it the fact that the drug company put money into the Government that they want to ignore the thousands of children affected. Course it is, I would love to meet the highest person in Government and have them explain to my babies why they all have this debilitating illness.  Just so upset x x x

Its 1;45 in the morning here, Erins just woke up crying asking for a drink. Ive settled her off to sleep and before I have a few hours sleep need to get Chloes tooth as Im being the tooth fairy. Her and Lauren are at the stage where they want to lose all their teeth cause they know when they lose one…the tooth fairy will arrive.  Anyway I started this blog to share my thoughts, feelings and give an insight to life with 5 children with disabilities.  Looking at the stats on my profile Ive had an overwhelming positive approach from people and Im absolutely astounded that with use of the web and technology FACS Syndrome is hardly known about. That IS going to change. I am absolutely determined that not just for my babies but for the thousands upon thousands it affects children GLOBALLY, that this will become recognised.  I want to thank you for visiting and supporting my blog.  A lot more pictures and information will be added in the next few weeks and I look forward to hopefully speaking and hearing your views. Goodnight everyone and have a fab day ahead of you x x x x x x x x x x x