Tuesday, July 27, 2010

'Second Skin' suit gives new lease of life to toddler

'Second skin' suit gives new lease of life to toddler whose joints dislocated every time she played

By Daily Mail Reporter
Last updated at 11:46 AM on 27th July 2010
Olivia Court (pictured) could barely walk without her knees or hips dislocating, but the toddler can now run and play thanks to a 'second skin' suit
Olivia Court (pictured) could barely walk without her knees or hips dislocating, but the toddler can now run and play thanks to a 'second skin' suit
A toddler born with a rare condition that means her knees and hips dislocate every time she tries to play or even walk is now jumping for joy thanks to an amazing SECOND SKIN.
Little Olivia Court suffers from Ehlers Danlos Syndrome, a rare condition which causes extreme hypermobility, meaning her joints regularly bend in each and every direction and often dislocate.
The three-year-old's condition was so extreme by the age of one she could not sit up or crawl and her parents were told she would never be able to walk.
But now thanks to a revolutionary lycra suit, that acts as a 'second skin', Olivia can run around and play with other children her age - a dream come true for the energetic toddler.
The suit literally works by holding Olivia in place and stopping the movements of her joints which lead to the painful dislocations.
The specially designed £2,500 body suit - which must be worn eight hours a day, five days a week - helps Olivia's muscles become strong enough to keep her joints in place.
Doctors have been amazed by the results and Olivia will get a new suit each year in the hope she will develop enough strength to combat her condition herself.
Olivia's parents had hoped their local NHS Trust would pay for the suit, but they turned down funding because they said there was a lack of medical evidence the suit actually worked.
It was paid for instead by their local community group Barwell and Earl Shilton Lions Club, who raised the money.
Olivia is now enjoying a much more normal life with parents Lena, 36, and Adrian, 41, a secuirty engineer, in Earl Shilton, Leicestershire.
Mother Lena said: 'Before the suit Olivia would fall over constantly, her joints would dislocate and she would just topple over. It was heart-breaking.
'She was always covered in bruises and would regularly miss nursery because she would suffer from chronic fatigue.
'But the suit has made the world of difference, she can't stop running around now and her hips haven't dislocated since. She can play as a little girl should be able to.
'The suit not only keeps her joints in place but it supports her spine and her core muscles and since wearing it, her hips haven't dislocated once.
'It really has given her a new lease of life, she loves wearing it because she knows it means she can play with her friends for longer.
'A year-ago she couldn't even stand up unaided and now she is running around everywhere. It really has changed her life.'
Olivia has one of the most extreme cases of Ehlers Danlos Syndrome, she was born without hip sockets meaning her hips were constantly dislocated.
Olivia aged 17 months after her first hip operation. She suffers from an extreme case of Ehlers Danlos Syndrome, a rare condition which causes extreme hypermobility
Olivia aged 17 months after her first hip operation. She suffers from an extreme case of Ehlers Danlos Syndrome, a rare condition which causes extreme hypermobility
Lena, 36, said the first she knew something was wrong, was when she noticed Olivia wasn't crawling or walking like other babies.
She said: 'Olivia would try to crawl and her legs would completely give way beneath her.
'The doctor said Olivia had one of the most extreme cases of EDS she had ever seen.'
Olivia underwent two operations to realign her hips, in the hope bones would form to help keep her hips in place. But the operations failed.

Lena said: 'Olivia had a plaster cast from her chest to her knees for eleven months and even then her hips would still dislocate.
'After the operations did not work we were told Olivia would never learn to walk. But as parents we refused to accept this and so we went to see a specialist at Great Ormond Street Hospital.'
Olivia was put through a two-week intensive physiotherapy session to help build her muscles and teach her to walk.
Lena said: 'It was an awful two weeks, she would scream and cry in pain and couldn't sleep for muscle spasms and cramps but she came home with a walking frame, so it was worth it.
Now at three-year's-old Olivia took her first steps, walking unaided for the first time in her life.
The revolutionary suit was almost Olivia's last chance to be able to play like a normal little girl, it was recommended to Lena by surgeons.


alhi said...

Oh wow! I hope it does work for her. from what I know about EDS (courtesy of you BG!) she's incredibly lucky to have been diagnosed so early in life.

Is there any possibility that such a suit would benefit you or is it too late in life to try and 'train' your body in that manner. I'd donate to any fundraising attempt you made!

BenefitScroungingScum said...

Alhi: Hello, are you all better now after the chicken pox?

Yes, she is very lucky and hopefully the suit will help prevent some of the inevitable deterioration for her.
Yes such a suit would almost certainly benefit me, it's how the physio with the theraband etc works. Funnily enough my physio tried to get me one of these suits not long before I was diagnosed with EDS but it was refused on cost grounds. So instead they 'treated' me with Botox and made my level of disability about 500x worse. Only consolation being that they no longer use Botox on bendy patients in Liverpool because through mine and one or two other experiences they realised pdq that it crippled us completely!

I might think about fundraising once I'm all moved in to the new place & DLA renewal is out of the way etc Xx

alhi said...

Excellent, I'll certainly donate via paypal and your begging box on pay day at the end of the week!

I'm only back at work now: 6 weeks off. Was horribly ill and very lucky not to have been in hospital, thanks to loving parents. Still get tired very easily, exhausted right now. Have been meaning to update blog but must tell you now: I was in agony with it, particularly sitting and lying (and standing!), but remembered my granny had a tempur seat cushion so dad was instructed to look it out. Much better! Then I remembered the bed in the back bedroom has a tempur mattres topper on it so I moved in there. Bliss. I haven't moved out of it since! I sank into it and it was painfree: I have a very tiny idea how you must have felt to get your mattress now.

BenefitScroungingScum said...

Alhi: Aw, thanks-you're too kind! I'm all ok at the moment though I shall consult you on how to fundraise for the suit later in the year :)

6 weeks for chicken pox, you poor thing, it must've been awful?!I'm so glad Tempur rescued you, it really is wonderful stuff! Would it make a difference for you to have one on your own bed? I'll donate if you want to fundraise ;) So glad you're better now Xx

Achelois said...

It seems these days that it is the charitable public that makes the difference. I read of another little girl some time ago who wore a similar version to one of these 'suits' and I hope they have allowed some breathing holes in this one, for the poor child was collapsing from heat exhaustion and the school were not being understanding about extra requirements for fluid etc. I can't see from the picture if she is wearing orthotics for her ankles although it is good to see she is wearing supportive shoes. I wish her and her family continued success with the suit and so good to see a smile.

Alhi - you have my sympathy with the chicken pox - my children - albeit aged 20 and 17 have just had severe chicken pox and required top dose high strength antibiotics and anti-virals - they were both extremely ill and still recovering. The virus in 'adults' is most unpleasant and my two are still recovering even now. The scarring with the EDS is somewhat of an issue.

I hope the suit does help as she is young. Imagine getting a teenager to wear one! Hopefully it will help tremendously with her proprioception - and hope it helps to make her muscles stronger at the same time.

I imagine her parents felt let down by the NHS when funding was refused. Thank goodness for the kindness of the collective individual eh!

Veronica said...

Oh awesome! I want one of these for my ribs and back.

And that photo of her in plaster is heartbreaking. Poor baby!

steph said...

Lovely to hear a good news story and it's great to see EDS getting the respect it deserves.

The bit I don't understand though is why Olivia's knees don't continue to dislocate as that suit doesn't appear to offer them support?

Perhaps her overall muscle tension has improved sufficiently to keep her knees stable?

This suit reminds me of when lycra was first introduced into clothes. I couldn't understand what it was about denim jeans 'with lycra' that made them more comfortable to wear than ordinary denims. Eventually the penny dropped that it was because the lycra offered support to weak muscles around my pelvic girdle. Only problem is, lycra is hardly what I'd call flattering!

BTW It's lovely to see Alhi and Achelois both back commenting. Miss you, guys!

Sciamachy Moran said...

That suit the little girl has reminds me of a fighter pilot compression suit, which keeps everything held in so blood doesn't pool away from the brain under hi-G turns. I wonder if they'd be any good?

Joanna Cake said...

What an uplifting story, although, as steph said, I am confused that the suit doesnt seem to cover her knees...? Is this a new version since they are so much stronger now?

BenefitScroungingScum said...

I *think* the suit works primarily by providing the proprioceptive feedback needed with hypermobile joints rather than actually holding any of the joints in place. If you look at the photo the suit doesn't fit snugly enough around the shoulders to be giving much support. As I understand it, it's the additional sensory input which is the more important part of the suit.

Cheap alternatives can be used by anyone wanting to give it a go. Leggings and leotards, especially the tight dance kind give great proprioceptive feedback and the kind of performance enhancing suits that athletes and some swimmers now wear are even better, though more expensive an option than basic dance wear. It works in a similar fashion to the theraband exercise I described a few posts back.

Hope that clears up some confusion? BG Xx