More Than A Mutha is all about championing women doing great things, and these women are doing just that.
These mums all have one thing in common, they are all trying to change the world to make it an easier place for their children, and others, to live in. Read their stories, I promise you will find them inspiring.
You may have read about Sarah in the press as she has staged 2 pretty big campaigns recently, one of which I was involved in last week. Sarah is working hard with other campaigners across the UK to raise awareness of the need for Changing Places toilets, and ultimately wants to ensure they are more widely available for people who need them. Sarah’s son, Hadley, has cerebral palsy and needs one of these facilities because he has to lie down to have his clothing removed before being lifted onto a toilet. Without a changing places toilet, Sarah has had to resort to laying Hadley on toilet floors, and now he is getting bigger and heavier she is risking injury to both of them every time she attempts to do that (not to mention the fact that laying on a toilet floor is vile!). In December 2017, Sarah posted selfies on the internet every day, but they were selfies with a twist as she took them sitting on the loo! And last week she hosted a ‘looathon’ on Baker Street, London and had campaigners from across the UK sitting on toilets in the street with their pants down! If that doesn’t raise awareness then I don’t know what will!
You can support Sarah’s campaign by signing this petition created by Lorna Fillingham another incredible Mum flying the Changing Places flag. Lorna recently delivered her petition to Downing Street but all signatures still count and are vital in pushing this through parliament.
Steph has been writing her blog, imaginatively named Steph’s Two Girls, for over 8 years now. It began as an online diary the day that her youngest girl, Sasha, was diagnosed with autism spectrum disorder 9 years ago. In the months following diagnosis Steph turned to the internet to do more research, as many of us do and read about the characteristics of Pathological Demand Avoidance (PDA for short). Sasha fitted these descriptions much more closely than those given for classic autism or Asperger’s Syndrome and it was a relief for Steph to find a group of other parents who understood the different challenges. Steph joined a group of parents forming the charity PDA Society in order to help offer parent and carer training courses to other parents who were looking for answers and she continues to support and share information via her blog, the PDA courses and Facebook groups to help other families who might be looking for the kind of support she needed when Sasha was first diagnosed. You can find her blog at www.stephstwogirls.co.uk
Emma was diagnosed with Epilepsy when she was a child and throughout her life has been treating using Epilim (Sodium Valproate) to manage her seizures. Throughout her pregnancies with all of her children she ensured her medical teams were aware of her medications and was always advised to continue taking the Epilim. Emma’s 5 children always seemed to be ill and she was convinced something wasn’t right but she was always turned away by doctors and never got any answers. Then one day, watching the news she saw a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome). Immediately, Emma knew that her children had this condition. What followed was months of tests and eventual diagnosis to confirm Emmas suspicions that all 5 of her children had this condition.
In November 2013, along with Janet Williams, the lady Emma had seen on the news, she Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time they started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)
Emma has successfully campaigned for 6 years and helped instigate the warnings onto the boxes of Sodium Valproate, after featuring on Panorama. She is passionate about ensuring that other women are aware of the dangers of taking Epilim in pregnancy so they can make an informed choice as to whether to continue using it or not while pregnant.
Laura’s son, Brody, has an undiagnosed condition and part of his condition means he is incontinent and relies on nappies. A few years ago, Laura set about convincing the supermarkets to stock larger sized nappies after Brody became too big for the largest size available in stores, but was still too young to have continence products supplied by the NHS. Several years later, and after a pretty public campaign, the supermarkets are finally starting to listen and understand the need for these products in their stores. Brody is now older and has his products supplied for him but that hasn’t stopped Laura working hard to make sure there are suitable nappies available in stores for other families in that transition stage she found herself in.
Laura also campaigns for changing places toilets and recently joined Sarah (above) in her looathon. She also writes an incredible blog which you can read here.
Helens family love to go swimming, but the procedure at her local swimming baths was something that prevented her son David from being able to go. David has severe autism and couldn’t comprehend that people had to to wait for up to 20 minutes for a wristband before they could enter the splash pool. Helen was determined that her sons autism wouldn’t stop her family from enjoying family swims. She worked with the manager of her local pool to come up with a system whereby the parents of Autistic children can call up an hour in advance and “book” wristbands, or turn up at queue jump so as to avoid the unnecessary waits that their children cannot deal with. This system has been so successful in her local pool that she is now in discussion to see it being rolled out across Derbyshire county, and after that maybe she can take it nationally! Follow Helens progress via her Facebook page.
Natalie Trice is mum of 2 boys and the founder of DDH UK, the UK’s only DDH charity. Natalie’s sister and two cousins were born with DDH and her second son, Lucas was diagnosed at nearly five months. Developmental dysplasia of the hip (DDH) occurs when the hip joint fails to develop correctly, it is estimated 1 in 6 newborns will have an element of hip instability and 2 to 3 in every 1,000 infants will require treatment. Despite such high statistics, Natalie was amazed at the lack of support that was available for her and her family and set up DDH UK to fill the gap.
Natalie has also written Cast Life – A Parent’s Guide to DDH and is a member of the International Advisory Board for the International Hip Dysplasia Institute. She is often seen in the media talking about the subject with passion and professionalism and is dedicated to raising awareness of a condition that has changed her life. DDH UK does not offer medical advice but provides information so you can deal with whatever your DDH journey throws at you. Find out more here
Shelley is an incredible woman who I have known of online for a while and recently had the pleasure of meeting. Her son, Fraser, is the reason she is trying to change the world and having seen her passion and drive I am sure she will do just that. Fraser has Duchenne Muscular Dystrophy (DMD), a condition which Shelley describes as being the most common genetic killer of children, but a condition no one has ever heard of. That’s something she is working hard to change by raising awareness of the condition. Shelley recently appeared on Jeremy Kyle’s ‘Britains Bravest Children’ show where she spoke candidly about Frasers diagnosis and the reality of it meaning his life is limited, I’m sure no one really wants to go on the Jeremy Kyle show but that just shows how passionate she is about raising awareness.
Last year, Shelley climbed Mount Snowdon which is no mean feat in itself, but she did it with her son strapped to her so that he had an opportunity to know how it feels to achieve something incredible, despite his disability. Doing that, Shelley raised £12,000 which she donated in full to fund research into treatments and, hopefully one day, a cure for this horrible condition. Shelley has recently been appointed CEO of Action Duchenne & will continue to fight for all children with DMD.
Nikki’s son was extremely medically complex, life limited and sadly unexpectedly died last Aug. A few weeks before he passed away Nikki’s local CCG decided to stop finding his NHS respite centre Nascot Lawn. A service which Nikki and many other parents relied on for support and respite. Together with another parent, Nikki pulled as many parents as possible together and began to campaign against the closure.
Nikki was determined to keep the centre open because all the children under their care, needed nurse led respite and all had very medically complex needs. Her own son, Lennon, could not even be left on a ward at Great Ormond Street without a parent because his medical needs were so complex and precise. Nikki’s campaign was picked up by national TV and radio, local and national press. She has taken the campaign to the House of Lords, met with 2 different health ministers, had various trips to Westminster to meet with MPs and even been to 10 Downing Street. They won 2 judicial reviews against the CCG but as we stand today, the CCG have withdrawn funding again (for the 3rd time) and as a result she is considering the best course of action going forward
Nikki has also joined up with Contact and The Disabled Children Partnership to campaign nationally against cuts to disabled children’s respite and works very closely with together for short lives and her local children’s hospice where her son spent time to try to change perceptions around palliative and end of life care. Despite losing her son, Nikki is still determined to push for changes to ensure other families get the end of life support they need. You can follow Nikkis campaign and find her blog at livingwithlennon.com
Vaila is an architect by trade and has always been aware of how important it is to consider accessibility in the design processs. But since becoming a mum to a daughter with limited mobility and sensory processing issues, she has a whole new perspective on the need for more thoughtful inclusive design and has realised just how inaccessible the UK is when it comes to architecture. That is something she is keen to change.
Vaila is passionate that inclusive design is design for everyone. It’s not only about wheelchair turning circles, grab rails or stair lifts it is about making life easier for people with neurodiverse conditions, people with visual or hearing impairments, parents with babies in prams, for crawlers, bum shufflers, toddlers, kids with bikes and scooters or even people with wheels suitcases, bringing in the weekly shop or moving furniture.
Vaila wants to see fantastic examples of accessible homes featured on TV makeover shows (not just DIY SOS) and in the homestyle magazines, so that disabled people and their families are presented with inspirational examples of how fantastic their homes can be, and (perhaps more importantly) so that non disabled people see inclusive design as an interesting and exciting design approach for life-long happy homes – to break the perception that accessibility is all ugly plastic grab rails and old fashioned stair lifts.
Vaila sees a huge potential for the design & building industry to make a real difference and is working hard to hopefully stimulate some positive accessible change through her blog and her work with other practicing architects.
Charlie’s son, Harry, was born with a very rare cranio facial condition called Goldenhar Syndrome which means that the left hand side of his face never developed. He was born with no eye, eye socket, nostril, ear and a short under developed jaw. He’s also autistic and technically non verbal (although hes a real chatterbox in his own way). Over the years Charlie has experienced a variety of reactions to Harry, often children will see him and look confused. They may point and whisper. Some children laugh and when he was very young, other youngsters would cry and run away from him. One boy once told her that Harry looked like a Halloween monster.
Charlie published a book detailing her journey as a Mother, unprepared for such a unique child and began to blog to continue their story. As she introduced Harry to the world over social media channels the response was largely wonderful but again, there was some negativity. People said she should have terminated him before birth, or should kill him now and “end his miserable life” (If only they knew how happy her boy is!) Some people called him names such as freak and ugly. The comments were hard to read at first but I soon realised that people are very ‘brave’ when they are anonymous behind a keyboard and they would be very unlikely to dare say any of these things to her directly. These comments, coupled with the sad realisation that she wouldn’t always be around to defend and protect her son, led to her starting a charity called More Than a Face.
Charlie is keen to change peoples perceptions and ensure that Harry grows up in a more accepting world so that he, and others, don’t have to face such negative opinions from people based purely on looks. So as part of More Than A Face, she delivers assemblies in schools to raise awareness of facial disfigurement. She provides some education around how people are born with or acquire facial disfigurements and some strategies to use if they ever meet someone like Harry. More than anything, Charlie wants people to know that feeling startled when they see someone who looks different is totally natural, but its what they choose to do afterwards which makes the difference. Buy Charlies book via this affiliate link