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Sophie’s Story

 

Just like any other 10-year-old, Sophie Cooper loves anything that is Disney related as well as baking cakes, crafts, listening to music & playing games.  She is also something of a dare devil and in the last year has been flying in a vintage aeroplane with her Dad at 5000ft, zip wiring with a Mountain Rescue Team and with some creative planning and lots of physical help she even ventured to the very bottom of Aysgarth Falls in Yorkshire. Sophie also has a very cheeky slapstick sense of humour which amuses everyone she meets.

What makes this all the more amazing is that Sophie was born prematurely at 24 weeks with Cerebral Palsy GMFCS 5 with Dystonia. Sophie also has Chronic Lung Disease, Epilepsy, gut motility disorder, Auditory Neuropathy and uses long term ventilation.

From a very young age Sophie needed help with sleep positioning but her parents struggled to find a solution that really worked for her.  That was until her mother Leanne attended Sophie’s Action for Children Creche and was introduced to Sarah Clayton, CEO of Simple Stuff Works, as she explains: “Sophie’s keyworker was due to attend a training/information day at St Francis school in Lincoln which I was told would be was aimed at professionals.  However, Sophie’s keyworker, knowing what a passionate advocate I am for my daughter, asked if I would be able to attend as Sophie was only a toddler at the time and I was still learning about Cerebral Palsy and worrying about what the future might hold for her. Sarah from Simple Stuff Works was there and was absolutely incredible!. The training day was a very real look at where things could go wrong if we didn’t continually review and monitor Sophie’s body shape which is something no person/professional had ever taken the time to tell me before. It was a huge reality check and a real eye opener and ever since that day I have been a keen advocate and parent facilitator for Simple Stuff Works. About 3 years ago, Sophie’s children’s therapy services department approached me to share my story and present to other families about the importance of the Goldsmith measuring system which I was delighted to do as I am so passionate about the difference correct sleep positioning can make having seen the benefits first hand with Sophie”.

Prior to discovering Simple Stuff Works, Leanne tried various sleep systems but found they often used a large amount of Velcro and supports that would make Leanne feel like she was tying Sophie to her bed every night and night times became a real struggle with many sleepless nights for Sophie and the rest of the family including Dad Craig, Sophie’s twin Erica and younger sister Kyla. Sophie found the Velcro very uncomfortable and the noise it made would often increase her dystonia and seizures so it was actually making things worse with no real evidence that it was having a positive effect on her body shape.

So, what difference has the Simple Stuff Works system made to Sophie and the rest of the family?

“The difference is amazing! To start with it is so much easier to put on. With the old system, we had to wait for Sophie to fall asleep and then carry her to bed because the look and sound of her old system would escalate into a dystonic episode/seizure. With the sleep positioning system from Simple Stuff Works Sophie will happily go to bed and allow us to put the soft rolls, cushions and knee cosy around her. The system has dramatically improved Sophie’s quality of sleep leading to improvements in her mood and alertness during the day and I would definitely go as far as to say improving her cognitive ability because she was then able to stay awake for longer and sit for longer periods of time without leading to distress and pain. With those positive improvements, it allowed my husband and I to sleep better and therefore enable us to function better during the day.  The system has alleviated a massive worry about her body shape and positioning leaving us less stressed and Sophie’s sisters were also able to get a better night’s sleep with no more wakeful episodes or emergencies”.

Over the past seven years Leanne, her husband, and the rest of the family have become firm friends with Sarah, Anna and the rest of the team at Simple Stuff Works: “They are some of the most incredibly dedicated and caring people I’ve ever had the pleasure of working with. Their ‘Team’ working relationship is something other organisations should really take on board and I love how there is always someone at the end of the phone/email should you need it. I always remember Sarah’s father John carrying out a home visit years ago, and although he was there to assess Sophie he also assessed Erica, Sophie’s twin for me. He gave me lots of ideas and was extremely thorough in explaining everything to me. Sarah too has been an incredible source of information and support when it comes to Sophie’s ever increasing needs as well as liaising with to organise training days for families I work with and I would not hesitate in recommending Simple Stuff Works.  In the 10 years I have been advocating for my daughter I have genuinely not come across a more caring organisation when it comes to specialist equipment and assessments” concluded Leanne.

Since first using the system some of the supports Sophie uses within her positioning system have changed over time as she has grown and as Sarah and the rest of the team at Simple Stuff Works have reviewed her body shape and the management of her airway at night.

The base of the system Sophie uses comprises of two layers of nonslip mesh between which supports are placed around her.  The supports can be lateral supports, wedges, pillows or teddy bears, ensuring that this Positioning System is the most versatile solution available and as there is no noise there is a greatly reduced chance of Sophie being disturbed during the night.  Hygiene is of paramount importance when using a sleeping system and the Positioning System from Simple Stuff Works contains silver which has been proven to actively combat communicable diseases such as MRSA, Salmonella and E-Coli through the application of SteriTouch.  SteriTouch is made up of a range of antimicrobial additives which reduce the growth of harmful organisms including bacteria, mould and fungi.

Headed up by sisters Anna Waugh and Sarah Clayton, Simple Stuff Works is a family business that truly believes in finding the right solution for each user as Sarah Clayton, CEO explained: “Hearing what a difference our system has made, not only to Sophie but the rest of the family is incredibly rewarding for all of us.  Our father developed the first therapeutic positioning system and has been involved in the research of sleep positioning and development of solutions for over 30 years, his face still lights up when we tell him about children such as Sophie.  Over the last three decades, we have helped thousands of people of all ages, from small children to the elderly, benefit from the correct therapeutic positioning and therefore help to reduce body shape distortion”.

In January 2015 Leanne founded the idea for a campaign called #notanurse_but which has become a national parent-driven campaign to help shine a light on the reality of life caring for a child with exceptional health care needs at home. Leanne is very passionate about improving services for children and their families so that children can be cared for at home rather than lengthy stays in hospital. Wellchild, the national charity for sick children have given parents the platform to allow their voices to be heard whilst helping them to gather much needed evidence in highlighting the gaps in services so that they can challenge decision makers and bring positive change for families in the community. You can find Leanne’s series of personal video diaries along with many other parents videos at https://www.wellchild.org.uk/supporting-you/campaigning-for-change/notanurse_but/ the website is also full of information and the latest news about the campaign.

#NOTANURSE_BUT campaign page – wellchild.org.uk

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