Hello


As my 1st blog to be honest I dont no what Im doing. Im taking you on my adventure as me and my family deal with the effects of FACS SYNDROME.  FACS is caused when an Epileptic  mum to be is obviously taking her medication to control her seizures, being great for the mum but has a devcastating effect on the foetus.  I had never heard of this condition until I was pregnant with my 4th child Erin.  Being a nursery nurse and now a mum I always knew something wasnt right with my babies as they werent progressing the way they should have been, werent reaching milestones . My mum had died very suddenly whilst I was pregnant with my 1st baby, she was 40 and died of breast cancer.  This was a complete huge shock and to this day will never get over losing her. I was diagnosed with depression as my world crumbled. As the kiddies were getting bigger there was always something niggling at me. As Id been diagnosed with depression every1 was always telling me “Emma, uve got depression stop being paranoid the Kids are fine” I knew they werent. I was adament and banged on about this, causing many arguements with my fiance, family and friends. I got a call one day from my sister urging me to turn on Granada Reports. There was a lady on the tv appealing for women who had taken “Sodium Valproate- Epilim, to come forward as this could cause FACS Syndrome, she listed the symptoms and seeing that article on the news was a light switching on and to this day has saved our lives. At that point I turned to my fiance saying “The kids have this”  That is where were upto now.

All 5 children  have all been diagnosed with FACS SYNDROME and symptoms we as a family deal with every day are:

Cerebral Palsy , Severe Laxed Ligaments (hypermobility) Valgus foot, Athsma, Incontinence, Autism, Aspergers Syndrome, Noise Intolerance, Facial Dysmorphiaand many other symptoms.

I no your asking yourself “WELL WHY DID SHE HAVE SO MANY CHILDREN????” Quite simply I was never told of this condition throughout my pregnancies. I attended all anti natel appointments with my fiance, Drs appointments and never once ever was this mentioned.  I was always advised to continue with my medication as it was controlling seizures relatively well and to increase my Folic Acid. THIS IS WHY I AM ADAMENT TO RAISE AWARENESS OF FACS. WOMEN OUT THERE ARE IN THE SAME CONDITION. FACS SYNDROME is now on the rise as all Epileptic Medicines such as:

  • Epilim (Sodium Valproate)
  • Carbomazipine and
  • Tegretol

are being prescribed for DEPRESSION, MOOD SWINGS , PAIN RELIEF, ADHD, BIPOLAR AND AMAZINGLY MIGRAINE.  Should this be allowed to continue ?????No it shouldnt, the Government are fully aware of this.  As Trustee for OACS Charity and FACT Trust, our aim is to provide as much help and support to children with this condition and to educate the public about this. We have already taken it to Downing Street .  If it takes me highlighting my families difficulties and struggles to get the condition recognised then that as a mum is what I have to do and thats the journey my family and I are on.

Twitter : Emma4oacs

emma4facs.wordpress.com

x x x

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15 thoughts on “Hello

  1. Wow. What a story. It just goes to prove you know your children better than anyone. That’s mother’s instinct for you. Good luck with your campaign. And thanks for sharing your experiences with such passion.

  2. Congratulations Emma on your first blog posting. Crikey, that really is tough. All credit to you for writing it up. I wish you well in raising awareness. Your words made me realise that I should put an immediate stop to my own moaning, which in the context of your troubles, is completely unwarranted.

    • Thank you Lee, in all my years of having Epilepsy I had never been told about this condition by my Drs, Midwives, Neurologists and the question is Why????? I love my babies to death but the daily daily struggles my family face is overpowering at times. Its more the questions, Lauren and Luke with the Cerebral Palsy are now at at age where they are questioning why they are “different” and keep asking “Why am i disabled mummy???” As a mum its heartbreaking. Ino there are mums out there at this minute in exactly the same postition questioning themselves , there children and like me, no1 believing them. We have set up a Charity (OACS) and also FACT Trust and with that taking it to Government and Education to get help for the children with this condition. This is a national campaign x x x

  3. Such a touching story and you have my sympathy and support. I had similar rows with my now ex husband and his family thinking I was a bad mother and failing my kids who were out of control. They are now both diagnosed with autistic spectrum disorder. Like you I just knew in my heart something was wrong. Keep fighting to raise awareness. If you inform just one person you will have done great deal of good.

  4. Well done Emma fabulous you are trying to make more people aware, i have passed your info on to @lisathedoula she is brilliant and will certainly make all her expectant mums aware i am sure xx

    • Thank you, that is my aim, if it means talking about my children to highlight this condition, Ive got to do it. I am also Trustee of the Charity and the Trust. Were the family in britain with the most affected children in 1 family x x x x

    • I will and have to make ladies aware. I feel things happen for a reason and if it involves telling my story, it has to be done in order to help other children and their families who are in my position x x x x Thanks for reading x x x x

  5. Hi welcome to blogging, and well done on raising awareness on FACS Syndrome having a disabled child myself I Know its hard, but so rewarding any little milestone is a massive deal. xx

  6. Fantastic blog I have 2 children one 18 and one 15 both have been diagnosed with Facs keep up the good work

    Best wishes Lisa xxx

  7. great first post. Well done you for writing. Please get in touch with our sister organisation http://www.onlymums.org (on twitter @onlymums) and we will post something up on the mums site.

    For now though, I will be retweeting.

    Hello btw 🙂

    Bob

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