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SOS helped local boy Harry Newman by generously donating a Sleep Pod so he can sleep comfortably.
Harry aged 5, suffers from Battens Disease; a rare and incurable genetic disorder that affects the nervous system. He has several seizures a day and struggles to swallow and stand up.
Parents Mica and Tom, and four year old sister Sophie look after Harry full time at their family home in Hilton, Derbyshire.
Mica and Tom are friends with an SOS employee, when Managing Director Gordon McQuilton MBE and General Manager Krystyne Czerpak heard about the story, they were more than happy to see what could be done to help make Harry more comfortable:
‘When I heard about Harry’s story, he had no specialist sleeping equipment. This is vital for someone who struggles with seizures, they need to be well supported and held in a comfortable sleeping position to prevent injury during sleeping and of course ensure a better night’s sleep. So we arranged for Harry to be assessed for a Sleep Pod Sleeping System’
Harry was assessed at home by Senior Community Equipment Specialist Ross Jakes who tells us about the process:
‘Using the vacuum consolidation technique we took an accurate measurement of Harry in a comfortable sleeping position. Harry was placed on our vacuum bag full of beads – like a giant bean bag. Air is then sucked out of the bag causing it to become mouldable. We then used our latest 3d scanning technology to capture the moulded seat so it can be processed and machined back at our facilities in Tutbury, Staffordshire’
After a few weeks, the finished Sleep Pod was delivered and set up by Ross on a second visit to the family’s home. The Sleep Pod features a Harness to help keep Harry secure during the night and was decorated with a custom made name plaque featuring the number of Harry’s favourite Formula One driver, Lewis Hamilton (number 44).
Harry Newman was in the national papers in April when he got to meet his hero Lewis Hamilton.
Triple world champion Lewis Hamilton spent 20 minutes cradling and hugging him and stayed longer than he was supposed to so he could see Harry when he was more awake after their drive to meet him in Brackley, Northamptonshire.
The meeting with Lewis Hamilton was arranged through British charity Starlight who grant wishes to seriously ill children across the UK.
Mica, Harrys mum says: ‘We let him watch the racing when he has a good day, he loves listening to Lewis race and knows exactly what is going on. When it is on TV at home he sometimes says Go-Go-Go’.
Now Harry can dream about having his own Maclaren race car whilst he sleeps in his brand new number 44 Sleep Pod.
Over the years Sam has had many SOS chairs and at present has a BB seat and Mojo wheelbase.
Her Mum, Annette explains: “Sam grows out of her SOS chairs every two years or so. SOS has always been good to Sam and when we found her arm rests weren’t wearing well they sent their head upholsterer Marilyn to our home to see the problem for herself ”.
Marilyn takes up the story: I had to go and see Sam at home to sort out a technical problem with the covers of her seating system, taking with me a pattern for the arm rests. When I got there it was clear the armrests were catching on the doorframes and tearing. So I made up some more in harder wearing vinyl. Since then there have been no problems.”
Whilst Marilyn was at Sam’s home Marilyn and Annette got talking about the ‘P’ Pod. Annette explains: “One time I’d brought Sam into SOS and I’d seen a little boy being fitted for a ‘P’ Pod and when Marilyn told me they made them for adults I decided to order one to give Sam another seating option at home. The ‘P’ Pod is the same height as our sofas so Sam really feels part of the family and when she went in it for the first time I’ve never seen her so relaxed! All our family and friends have commented on it. Because she finds it hard to communicate she can get quite cross but when she’s in the ‘P’ Pod she’s like a different young woman. I’m absolutely delighted with the effect it’s had on her. Sam has a standard ‘P’ Pod with growth liner so if she does grow any more she’ll still be able to use it.
“I really can’t thank SOS enough for all the help they’ve given over the years. I’m convinced Sam’s chairs – both the BB and the ‘P’ Pod – have given her a better quality of life.”
Luke explains: “I go to Portland College where I stay all week. At college I learn how to use a computer, cook, wash and even play the Wii drums.”
He’s working hard to learn to be independent, which is something his parents really encourage.
Deborah, describes what both parents have been through to get him here: “Luke was born prematurely and as a result was really poorly. At 12 days old he had a massive fit which lasted an hour. Then he had another and had to be tube fed. We took him home where he became more relaxed and started to gain weight. Neighbours helped me cope and home help gave respite. However, we’ve always challenged both his condition and what medics told us he was capable of. During his early years we spent time in Hungary where Luke received help to build his muscles. He was soon using a tricycle. He then went to mainstream school where we saw real improvements such as him asking to use the toilet. We believe what you put in you get out and we’ve always encouraged him learning to be independent.”
“He’s been at Portland College, for people with disabilities, for one year which is part of a three years course, where he learns life skills and how to do things to help look after himself.”
Luke has a left side weaker than his right but both his parents say his left hand is improving. To help support his posture he’s been given an SOS BB chair which is a modular design. This means that pads to be altered easily to support his changing needs. Luke’s BB chair has been fitted to his electric wheelchair from another manufacturer which also helps him get about unaided. The SOS Quick Lok system fitted to his chair was designed for exactly that purpose so it can be used with other wheelbases. This helps give Luke his independence so he’s able to do activities and get integrated in projects at school.
Deborah continues: “The BB chair has side supports to ensure his posture is nice and straight. He also has a harness across his chest which stops him tipping forward. The pommel between his legs keeps his frame in the right position but also ensures that he doesn’t slip down in his chair. In addition to this his chair has a tilt function. We’ve shown him how to check his posture is correct and Luke does this religiously. So if he feels as though he’s slipping out of the correct position he can tilt himself back and right himself easily. He knows exactly what to do and constantly checks himself.”
Luke spends most of his time in his chair which not only allows him freedom to get about but also helps correct his posture. He’s gaining in upper body strength and he’s getting straighter legs. The BB chair is for those that need midline support – to ensure posture is supported and ultimately beneficial. This type of seating is robust and SOS fits each seat individually according to the client’s needs.
Assessments are usually carried out at local wheelchair service Special Seating Clinics. Deborah concludes: “We want him to be independent and he thoroughly enjoys learning new skills at college and coming home at the weekend and telling us about his week. We think that his chair, because it supports his needs, has helped him enormously.”
For Tia Lissenchepaly means that she has no speech and the mental age of a six to nine month old baby. In addition her condition means that her physical development has been profoundly delayed and she has poor muscle development. She is unable to sit unaided.
Tia has been referred through the NHS and has several pieces of Specialised Orthotic Services’s (SOS) equipment which, as her parents Sue and Ian explain, has helped both her mental well being and physical symptoms of her condition:
“Tia has very poor trunk control and she has a dislocated hip which means that she needs seating that both helps correct her hip as well as give full body support.
“She has a Mojo seating base and a BB seat, both from SOS, and despite being on medication which restricts her weight-gain she’s now in her third chair in five years. The BB seat is a modular seating system which can be adapted to Tia’s needs.
“Tia’s seat has several components to help her – a head rest which helps keep her head in an upright position and helps her see what’s going on around her. Her harness helps support her trunk and stop her falling forward and a hip belt and pommel both help keep her dislocated hip in the right position. We believe this seat has really helped her physical development. When the physiotherapist examined her she couldn’t believe how straight her spine was. She was expecting it to be curved. Ankle supports and foot rests also help keep her grounded as she can feel her feet are supported.
“We believe her seating has also helped with her digestion. Tia suffered with digestive problems and was diagnosed with dysphagia. She was inhaling her food into her lungs and getting weekly chest infections for which she was being hospitalised. This was a real worry and the doctors suggested a peg so food could go straight into her stomach, but we wanted to explore other options as once the procedure has been undertaken it’s irreversible. Once Tia was fitted with her BB seat the problems stopped. She’s not had a chest infection since thank goodness.
“She also has a ‘P’ Pod from SOS which we decided to buy privately. It’s a great piece of kit as it looks like a beanbag and gives her another seating option – she can view the world from a different angle. We chose the standard seat, as opposed to the moulded one, so she can grow into it. It’s a great addition for us too because it’s unobtrusive in the home and it’s so easy to transport and move around. She goes in the garden in it and is really happy, and because it’s lightweight and easy to assemble and take apart we can just throw it into the car and take it on holiday with us.
“Tia was one of the first children to have a ‘P’ Pod and we came across it at the Naidex exhibition. We’d taken Tia there to have a look and see what new equipment was being developed and saw the ‘P’ Pod on SOS’ stand. Well we had to let Tia have a go in it and as soon as she was seated she was really happy, clapping away. Then sat back and put her hands behind her head, something she rarely does. She looked really chilled and relaxed. She even drew a crowd of passers-by who couldn’t quite believe what they were seeing.
“When we’re out and about it’s amazing how many people stop us in the street and ask ‘Is that a BB chair?’ both medical professionals as well as parents of disabled children. We’re really thankful for all the SOS has done for Tia, the equipment has really helped her condition and because she’s such a happy child it means caring for her is a pleasure.”
Tia goes to the Woodlands School in Coleshill and the family live with Tia’s 19 year old sister, Elizabeth in Atherstone, Warwickshire.
Her Mum, Jane, explains: “Lucy was diagnosed with her condition at five days old. When she was a little baby she had a traditional baby pushchair but it had no padding so we knew that Lucy would need specialist equipment that would benefit her needs and development so she was both comfortable and happy.
“Lucy was one of the first to have a ‘P’ Pod from SOS and it’s fantastic for her. Because it’s moulded her torso gets the support it needs. The beanbag design makes it easy for us to put her in a reclining position as she can get quite chesty so sometimes she benefits from being in different positions.
“It’s great for us as a family as well it’s so easy to use and move around. We can take her in the garden, which she really enjoys, and when we’re visiting friends and relatives because it’s essentially a beanbag it means it’s easy to put in the car. It makes it much easier not having lots of bulky equipment. We also loved the fact we could personalise it so we chose to have Lucy’s name embroidered on the front.
“Lucy’s been going to Saxon Hill Special School in Lichfield for two years so we knew we’d need to get equipment that benefits her in a school environment. We needed a seat which allowed her to both sit up and lie back. She also has dislocated hips so we couldn’t opt for a traditional stander so she had a customised Straddle Seat made by SOS which allows her to be in a better functional position and keeps her in an extended position reducing the stress and discomfort through her hips. This has helped her to join in classroom group activities with her class mates and work on developing more functional activities.
“The Custom Straddle Seat is attached onto a Glider Mobile Base which has a rise and fall action to allow her to access things at different heights and also a tilt function so her teachers can recline her should they need to. We also use it at home when we’re dining as a family. It means she can join us at the dinner table using the rise function to achieve the required height so she always feels included in whatever we’re doing.
“As a family we like to get out and about so we chose the Mojo Stroller buggy which has a moulded seat custom made to give the exact support Lucy needs to sit well supported and comfortably. We like that it has big sturdy wheels which is great for rough terrain, it also looks like a traditional pushchair and we could also choose the colour. The good thing about SOS equipment is that it is tailored to suit the individual so once Lucy had the cast taken of her body in its correct seating position that was it. All her equipment has been developed and tailored to suit a variety of needs.”