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In Memory of Ali

Despite being born with Athetoid Cerebral Palsy, 25-year-old Ali McIntyre was very much the dare devil of the family and loved being outdoors as his mother Suzi explains: “Whether it was tandem paragliding in South Africa, parascending in Cyprus or riding cart horses Ali was always at the front of the queue and determined to have a go.  Ali also loved music festivals and attended several this summer. I am convinced that none of this would have been possible without the fantastic night’s sleep and associated benefits he got thanks to his Simple Stuff Works Night Positioning System”.

As a result of his condition, over the years Ali’s body was affected in that his spine curved to the right so when he lay down his body moved sharply to the left.  When Ali was seated, he collapsed down on his left side.

Over the years, Ali’s family had tried various night time positioning systems as his mother Suzi continued: “We had tried numerous sleep systems over the preceding 10 years but he just pushed and wriggled his way out of them so I had given up. I also did not understand the importance of helping to straighten out his body while he slept and had no idea that this could cause secondary complications and even premature death”

In 2011, Ali’s Occupational Therapist Carole Barefoot who worked at Star College which Ali attended suggested Suzi attend Naidex and visit the Simple Stuff Works stand to look at their night time positioning systems and see if they would work for Ali.

“At Naidex, Anna from Simple Stuff Works spent lots time with me and gently showed me the pictures of the deteriorating spine and posture of a young man with a similar condition to Ali. She explained the impact on his internal organs from the collapse of the left side of the body, the problems that this can cause including premature death and I literally burst into tears on the spot, I could see that was exactly what was happening to Ali. I knew I’d come to the right place and that I had to do something fast. Anna showed me the progress this young man had made once the Simple Stuff Works positioning system was being used every night and I booked an assessment straight away”.

This reaction is not uncommon as Anna Waugh, Managing Director, Simple Stuff Works explains: “Many parents are highly skilled when it comes to positioning their children during the day, but they may feel less confident about the importance of correct sleep positioning and postural support at night. Regardless of age, night time positioning is incredibly important for someone with a condition such as Ali’s and it is the aim of everyone here at Simple Stuff Works is to ultimately eliminate the additional medical complications that can be caused by poor postural care and night time positioning”.

Within a month of meeting Simple Stuff Works at Naidex, Ali was using his positioning system every night. Ali’s posture started to improve and he was soon able to spend the whole night in a neutral, straighter position which resulted in him being far more comfortable and able to get a decent night’s sleep.

“All the professionals that work with Ali were amazed at the change over the 6 years we have been using this positioning system. It has given them all real encouragement to work harder in their own areas of expertise, an unexpected bonus!  Ali’s needs were complex and Simple Stuff Works have been tremendous in their support and inventive creativity to find a solution, Anna, Sarah and the rest of the team are real experts as they really know what they are talking about and work out a bespoke positioning system for each individual. Nothing is too much trouble and they are so very helpful and go out of their way to resolve all the challenges they encounter” continued Suzi..

The Simple Stuff Works Positioning System has been designed to offer a comfortable, hygienic and safe to use solution whilst helping people of all ages maintain a position that reduces the risk of body shape distortion.  This is vitally important for someone like Ali as it will help prevent additional surgical procedures and further discomfort.  For Ali, the positioning system is part of a 24-hour postural management plan.

“It is fantastic to hear such positive feedback from Ali’s mother.  For Ali, our positioning system ensured he could remain comfortable and supported during the night and by using the equipment he could protect his body from otherwise predictable secondary complications, such a scoliosis and hip dislocations, and it allowed him to benefit from a more rested night. We were devastated to hear of Ali’s untimely death and we will always remember him in our hearts and prayers.” said Anna.

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