Co founder
@Infactuk
Official Campaign/Trust for AEDs in Pregnancy๐คฐ Mum of 6 โค๏ธ Keynote Speaker & Award Winning Campaigner & Podcaster
#FVSD
#FACS
#Epilepsy
On this Xmas, so very proud to be recognised alongside
@JanetWilliams99
by
@thetimes
for โ The Alternative Honours Listโ
For years we begged people to support our work & campaign for 1 of THE biggest medical scandals
Finally we achieved that๐๐ผ
This week has left my family heartbroken. But I thank God to the amazing NHS Surgeons and Staff that have saved my husbands life after a 10cm Aneurysm on his heart was found and operated on. A long road to recovery but he is ALIVE ๐๐ฅ๐๐ฅ๐๐ฅ๐
My husband is fighting for his life in hospital โฆโฆ. Yet I canโt visit him๐๐ข
My 2 children this week tested positive for
#COVID19
so I am โdoing my legal duty โ having to self isolate ( words said to me by test and trace)
Why one rule for us ?
#pisstake
#alevelresults2023
Born at 31 weeks with a hole in her heart. Diagnosed with
Fetal Valproate Spectrum Disorder/ Autism
Cerebral Palsy
Athsma
Hypermobility
Itโs been very tough at times but sheโs never let her disabilities stop her. Thatโs our girl โค๏ธ
๐คฉ ๐๐คฉ๐๐คฉ
@jessphillips
You know when you think you canโt get any more speechless by hypocrisy....... these are children ๐ข๐ข Absolutely saddens me so much ๐
Honoured & so proud to Receive โSpecial Recognition Awardโ for our National Campaign and work we do.
Women have a basic human right to know
#Epilepsy
medicines may harm their babies when taken during pregnancy
Weโll forever continue our work for informed choice
#valproatecrisis
#Epilepsy
absolutely won today. 2 hours of
#seizures
๐ง
I honestly donโt know how I would cope if I didnโt have my husband heโs just the best ๐
Am absolutely exhausted, tearful, sore and aching ๐ข๐ข
Huge congratulations to
@marksandspencer
for using the Kaye Walker Frame in your promotions. My daughters frame is the only way she can walk independently so itโs great to see such inclusion
#CerebralPalsy
#Inclusion
#Disability
๐๐๐๐๐๐๐๐๐๐
Following my Official Complaint with regards
#Burys
failure with my sons EHCP, the SEN Dept have informed me they will name the college & amend his EHCP
As Parents we shouldnโt have to continuously submit complaints to get the correct support for our children with
#disabilities
Tonight I listened to such an empowering, thought provoking and utterly inspirational story by
@AngelaRayner
She is the here and now and the future for our children/grandchildren . An absolute pleasure and honour to finally meet you ๐๐ผ๐๐ผ๐๐ผ
@JanetWilliams99
@AndreaLSimpson
@jessphillips
Absolutely appalling and insulting..... Iโve a 3 year old and was so very poorly. I still had to get on with it, with my sick husband following heart surgery and also my children with disabilities ๐คฌ๐คฌ๐คฌ๐คฌ
The advancements with Hearing Aids ๐๐ just picked up my daughters and they now connect to Bluetooth enabling her to listen to her music. Itโs her birthday today and sheโs absolutely over the moon ๐
#hearingloss
#deafness
#fetalvalproatespectrumdisorder
@jessphillips
Itโs dismal,Iโm fighting to get services for my children that they should be entitled to but funding has been cut. As parents life is hard enough to then go &!fight authorities/hospitals for care needs for our children ๐คฏ๐๐คฏ๐๐ฅบ
#fetalvalproatespecturmdisorder
#valproatecrisis
Another proud mum post ๐คฉ๐๐
My little fighter Lauren, my 3lb premature baby who has had to fight the hardest & overcome barriers but always done so with steel grit, determination & a smile ๐ has been offered her chosen University of
#Salford
to Study Psychology
#fvsd
#Oliverscampaign
Such fabulous news for lovely
@PaulaMc007
This story demonstrates how good effective campaigning can and should be done and the lengths we as parents will go to get justice and the truth for our children
#Valproatecrisis
RIP Oliver ๐
๐Move Mountains by Climbing Them๐๐ผ
I never anticipated how hard it would be but I think the weather played a huge part of it โ๏ธ โ๏ธโ๏ธโ๏ธ
Apart from my children THE biggest achievement ever
NEVER to be done again ๐คฃ๐๐ผ๐๐คฃ๐๐ผ๐
@JoanneMckinlay4
@LeslieRickeyMD
@DrLAckerman
@BethMuellerMD
@brubaker1030
This really is an insult. I literally had 10 if not more glasses of water last night whilst crippled at the toilet , blood in urine, shivering , feeling sick, pain in my lower back. Water didnโt help that much neither did the Cranberry Juice as suggested by 111 ๐ฅฒ๐ฅฒ
My daughter is currently Year 3 and last year studying Health & Social Care. For her last research assignment she picked
The
#Valproatecrisis
Story and How herself having Fetal Valproate Spectrum Disorder affects her life.
Iโm so proudโฆ. She achieved A* โค๏ธ๐ซ
So sad about Sarah Harding. My mum was 42 when she passed away
#breastcancer
I thought she was young, but 39 is so young ๐ข
Ladies & Gents keep checking your breasts, donโt feel paranoid or โitโs nothingโ
From personal experience, it can save your life ๐
#RIPSarahHarding
@RealDeniseWelch
Just watching the football, stadiums back to full capacity, which is fantastic ๐๐ผ๐๐ผ๐๐ผ๐๐ผ Yet hardly any masks being worn?
However our children have to wear masks ?? Just so contradictory like everything else ๐ฅบ๐ฅบ
40 weeks ago I started my training for
#BenNevis
It has been the biggest but the best challenge
Iโve lost weight & inches
Feel a bit fitter than I did before
On Saturday I will climb for the 20,000 persons disabled by
#valproatecrisis
#Valproatecrisis
Today new prescribing measures for
#Valproate
come into force
#Valproate
must NOT
be started in new patients (male or female) younger than 55 years,unless 2 specialists independently consider & document that there is no other effective or tolerated treatment
We can now finally Confirm from the Health Minister
@jamesosh
@MHRAmedicines
that a Valproate Register is being introduced, meaning that for women who HAVE to be on Sodium Valproate they will be tracked and monitored regularly
@JanetWilliams99
@normanlamb
1๏ธโฃ5๏ธโฃ years ago at 31 weeks in the car park at Hope Hospital in Hubbys taxi, I gave birth to the smallest baby I had ever seen. Lauren weighed 3lb and was very poorly for a long time. Despite everything we were told by lots of different Drs, today she turns 15 ๐พ๐๐ง๐ญ๐๐๐๐๐
Yesterday my beautiful 3lb premature baby turned 1๏ธโฃ8๏ธโฃ
She was born with a hole in her heart,
#cerebralpalsy
#fetalvalproatespectrumdisorder
#autism
and was a very poorly baby. She has defied the odds of what the Drs told me when she was a baby.
Iโm the proudest mum 1๏ธโฃ8๏ธโฃ๐พ๐๐คฉ๐๐ผ
The All Party Parliamentary Group for Valproate and other AEDs in Pregnancy would like to welcome long time supporter of our campaign/work
@RosieDuffield1
as an officer.
We
@JanetWilliams99
@Infactuk
look forward to working with you
Parent Burnout is real and Iโm feeling it ๐ข๐ข
Today Iโve received my sons final EHCP with his post 16 college named. He will now get the support he needs to continue his education
My thanks to my MP
@Christian4BuryS
for your support
#fetalvalproatespectrumdisorder
#autism
Ahead of the
#cumberlegereview
Announcement next week we
@Infactuk
want to publicly acknowledge & thank Mr Michael Mansfield QC &
@NexusChambers
for representing & supporting us with the Remit, answering the case for compensation/care plan for those harmed by
#valproatecrisis
Different to reading it online and feeling very teary ๐ฅฒ ๐
An AVOIDABLE Man made Tragedy
For 50 years EVERYONE watched it happen and still when we
@JanetWilliams99
started our Campaign NO urgency despite the knowledge of causing Autism & lifelong physical disabilities
2 years today my baby boy had his second operation on his Kidneys. Such a desperate, worrying time filled with lots of tears and not sleeping.
This year aged 4 he had the best Xmas and brought such laughter and delight ๐๐๐ ๐ป๐๐๐ ๐ป
#Keppraexposure
#facs
Over the moonโฆ. Our 3lb baby has had her 1st University Offer
Proud parents do not cut it , she has worked her socks off all her life and overcome hard barriers ๐คฉ๐๐คฉ๐๐คฉ๐๐คฉ๐๐คฉ๐๐คฉ๐๐คฉ๐
#cerebralpalsy
#autism
#fetalvalproatespectrumdisorder
Congratulations Lauren โค๏ธ
2 years ago today I was about to go into a meeting at MHRA but got a call that my husband had collapsed with Drs finding a 10cm Aneurysm at his heart. Drs told me to โgo home & prepare the childrenโ & pray.
Heart surgery and our wonderful NHS surgeons saved his life ๐๐
8 Year Wedding Anniversary ๐๐๐The man behind everything I do, having a young family all with disabilities, I couldnโt have done the last 8 years of Parliamentary work without him. Thank you for supporting my vision and work ..... Hereโs to another 8 years
#anniversary
Thank you
@dobsonMEN
@MENnewsdesk
for helping to continue raise awareness of Fetal Valproate Spectrum Disorder and the risks of
#Valproate
#Valproatecrisis
No one warned me': Battle of mum whose prescription caused autism in five kids
๐งต ๐งต
#valproate
has been a regulated drug for nearly 50 years in which Government, Sanofi & Shareholders have ALL profited from
We
@Infactuk
started our campaign for safer warnings in 2012 and have been met with a reluctant, dismissive, arrogant attitude from ALL involved
Feeling a proud mum tonight, just been notified by email my daughter has accepted her place on Level 3 Health & Social Care Diploma.
Born at 31 weeks with a hole in her heart, Sheโs beat the odds all her life
Our girl is amazing ๐คฉ
#fetalvalproatespectrumdisorder
#proudmum
โค๏ธ
5 years ago my son was told by ENT he had hearing loss & needed to wear Hearing Aids to help him.
The 2nd Audiologist would NOT give him the Hearing Aids. He has struggled with his hearing all this time
3 weeks ago ENT initiated the appointment for Hearing Aids
@ShaunLintern
๐
๐จ EXCLUSIVE: NHS trusts across England are scrambling to trace thousands of children for urgent hearing tests amid fears that cases of infant deafness may have been missed for years 1/8 Pls RT
Wow!!!! Thank you so very much.... Itโs an honour representing and leading the Campaign for all the children and adults affected by
#Valproatecrisis
๐๐ฅ๐ฅ๐ฅ๐
#Alreadyawinner
@Emma4facs
has been nominated for the Positive Role Model Award for Disability at the National Diversity Awards 2020 in association with
@itvnews
๐คฉ๐ค Congratulations Emma! You can vote by visiting
#NDA20
#Vote
#bbcpanorama
Iโm the mum that has had to constantly be the voice for my 6 children with SEN against health professionals, education, Local Authorities, schools , welfare .... I will continue to shout for them and the thousands of other children harmed by
#valproatecrisis
Me and Hubbyโฆโฆ OUT OUT on a dateโฆ,, with NO children โค๏ธ
The physical and mental stress these last few months, going to have a great day ๐ฅโค๏ธ๐ฅโค๏ธ๐ฅ
After their children were harmed by the epilepsy medication, Murphy, 42, and Williams, 58, have almost single-handedly taken on the government to campaign for safer use of sodium valproate, and for compensation for the 20,000 families left with a disabled child.
#RareDiseaseDay2021
My children diagnosed with Fetal Valproate Spectrum Disorder, a man made tragedy ๐
Impacted all their lives,with so many challenges๐
I will continue to lead the Campaign with
@JanetWilliams99
so children like mine get support they need
@rarediseaseuk
#IntermittentFasting
and
#Keto
has changed my life for the good both for my
#epilepsy
and weight
From a size 22, today I got into new size 14 work pants
If I can do this, anyone can ๐๐