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 being positioned during the assessment process

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 trying out his new Custom Moulded Sleep Pod, Embroidered with his name and Lewis Hamilton’s race number, 44.

Cuddles with Lewis Hamilton

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.

Lewis Hamilton cradling Harry Newman at the race headquarters in Brackley, Northamptonshire.

Luke Woolett, aged 19, is a chatterbox – in the nicest sense. He is a quadriplegic, all four of his limbs are affected by his condition. He’s been in a chair from a young age, but he has an active life, a spirited outlook and an opinion on everything! We met Luke at Specialised Orthotic Services’, otherwise known as SOS, headquarters in Tutbury, Staffordshire with his Mum Deborah, and Dad Rob.

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.”

Lucy is six years old and has Agenesis of the Corpus Callosum (ACC) a rare birth defect which means the middle part of her brain is absent.  Lucy’s condition means she has no sight, low muscle tone, poor motor coordination and chewing and swallowing difficulties so she has a gastronomy tube for feeding.  Her posture hasn’t developed properly so she can’t sit up by herself so her condition means having the right equipment is essential for her health and wellbeing.

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.”