Titanium rods in her spine can't keep this Toronto teen from the stage : Toronto

Just 3 months ago, Jaya Scott underwent surgery for scoliosis. Now she's one of CNE's 'Rising Stars'

Warming up backstage before recital is a routine that Jaya Scott has performed dozens of times, but for the 17-year-old from Scarborough, Sunday night was special.

The young dancer took to the stage for the first time since undergoing spinal fusion surgery for scoliosis at SickKids Hospital — something she feared could mean the end of her dance career.

It was about two years ago when Scott's mother first sensed something was wrong.

• After painful surgery and recovery, Oakville teen not just a model, but role model too
• 'Results were amazing' when teens with scoliosis did specialized exercises
• Teens' scoliosis helped with braces

"I was just noticing a little bit of her back sticking out when she bent, and her shoulder was slightly off-balance," Natalie Scott said.

An 'intense' year

Scott took her daughter to the hospital, where they were referred to a specialist. It wasn't long before she was fitted with a brace and told she'd have to wear it 23 hours a day.

For the next year and a half, Scott said she watched as her daughter struggled, on a waiting list for surgery with no fixed date in sight.

"Wearing it at school each day, taking it off to dance, putting it back on and trying to cover it underneath her clothes," she said. "It was quite an intense year and a half."

In May, it was finally time to go under the knife. Over the course of nine hours, doctors would place two titanium rods on either side of Jaya's spine to correct a 60-degree C-shaped curve.

Over the course of nine hours, two titanium rods would be placed on either side of Jaya's spine to correct a 60-degree C-shaped curve. (Submitted)

All the while, Scott said Jaya was fixated on one thing only: "Mom, am I going to be able to dance again?"

Discovering new ways to move

Doctors assured Jaya she would. But before she could dance, she'd first have to relearn how to walk.

"It was a little bit of a struggle at the hospital at first," Scott recalled. But with each passing day, Jaya was exercising a little more, walking a little more, and getting that much closer to the stage again.

Before she was diagnosed with scoliosis, Jaya's dance specialty was contortion. But the metal rods in her back meant that was now physically impossible. 

Warming up backstage before recital is a routine that Jaya Scott has performed dozens of times, but for the 17-year-old from Scarborough, Sunday night was special. (Barry Smith/CBC)

"It was hard because I had to discover new ways to move my body and new things to do other than contortion because that's what my body's used to," Jaya said. "It was challenging at first."

Jaya was just grateful she'd be able to dance at all, especially after having to sit on the sidelines as her teammates competed this year.

Then, two weeks ago, came the news Jaya had been waiting for: Her doctor gave her the clearance to dance again — just in time for the Rising Star talent competition at the Canadian National Exhibition.

'You've got to walk before you can dance'

Jaya was elated.

"I just hope to be the best that I can be," the teen told CBC Toronto ahead of her performance.

If the crowd's reaction was any indication, Jaya did exactly that, wowing the audience with a jazz routine choreographed to the classic I Put A Spell On You.

Jaya's mother, Natalie Scott, said she motivated her daughter through recovery by telling her, "You've got to walk before you can dance." On Sunday night, she did just that. (Submitted)

"When I'm dancing it's like I'm telling a story," she said. "It's very meditative, I just feel relaxed when I dance and I feel like I can just express myself.

For her mother, who watched as her daughter's confidence shrank under the weight of a brace for more than a year, seeing Jaya dance in that effortless-looking way was worth all those nights of anxiety spent showing her success stories of people who'd managed to take up their passions again after surgery.

"One of the things I would keep saying to her is, 'You've got to walk before you can dance.'"

An on Sunday, Jaya did.

Source : CBC News , 28th Aug 2017 

Family of teen with neuro-muscular disorder seek PMO's help for drug worth Rs 48 lakh available only in United States

A 14-year-old girl Anushka Panda suffers from a rare neuro-muscular disorder called spinal muscular atrophy (SMA). The disorder affects the nervous system that controls muscle movements. A drug that could help cure the condition costs Rs 48 lakh per year and is only available in the United States.

Anushka's parents have now approached the Prime Minsiter's Office and met the health minister for help. Anushka was just a year-and-a-half when she was diagnosed with the disease, which is progressive and life threatening.

"I have Scoliosis so I wear a brace which is very uncomfortable. Life at home is little easier than the one I lead at school," said Anushka.

Fo all these year, there was no cure for this disorder but now Anushka's parents have a ray of hope after a US-based company developed a drug called Spinraza. But the drug is available only in the US and is priced at $ 75,000 per year, which amounts to Rs 48 lakh.

"She was diagnosed with Scoliosis of the spine which means the muscles do not have the strength to hold the spine erect. It has become a threat to her life and we are not able to take the call on her surgery. It is an 18-hour surgery and the child needs to have at least 50 per cent of lung funtion. I sincerely request the PM to intervene or may be the External Affairs minister can talk to US and make the drug available to our kids. I also request that the health care system in India is revamped so that the cost will not be a matter later," said Anushka's mother.

Dr Anshu Rohatgi, senior neurologist, Sri Ganga Ram Hospital, joins Rajdeep Sardesai to explain the disorder and whether the drug can be made accessible to Anshu and other patients suffering from the disorder. "It is a very rare condition where the neurons in the spinal cord degenerate and you have a progressive muscular weakness. The drug Spinraza has shown some promise. It was approved in the US in 2016. Unfortunately, this drug is very expensive. It costs approximately Rs 48 lakh in the first year, thereafter it costs Rs 24 laks in the next year," said Dr Rohatgi.

"Bringing down the cost might not be possible unless the company agrees to. India is very far away from researching in these critical areas because, unfortunately the clinical trials have disappeared since the last few years. None of the big companies come to India for trials because of the environment," he added.

For Video , Please visit on : http://indiatoday.intoday.in/video/neuro-muscular-disorder-spinal-muscular-atrophy-scoliosis-spinraza-us-india/1/1039222.html

She's one of Britain's most talented swimmers but without a £45k operation she will never swim again

A talented 12-year-old swimmer from Shirley faces the "devastating" prospect of never competing again without life-changing surgery on her severe spinal deformity.

                                              Marion with her parents Carolyn and Brenton

Schoolgirl Marion Cole was diagnosed with idiopathic scoliosis in May this year and has a 68 degrees curvature of the spine, causing her unbearable pain.

The Croydon High School pupil requires surgery and hopes to go to Germany to have vertebrate body tethering (VBT), which aims to correct the spine's curves without the need for a fusion.



                                                          Swimming is 'Marion's life'

A fusion procedure on offer in the United Kingdom would mean she would never be able to swim again.

However, the German procedure will cost £45,000.

Carolyn Camphell-Cole, Marion's mother, has seen her daughter suffer since January this year and told the Advertiser the family will do all it takes in order to raise the cash required.

The 48-year-old, who lives on Pleasant Grove, in Shirley, with her daughter, said: "Day to day it causes her pain and just before we went off on school holidays it was a struggle for her to walk from the bus stop to home which is only two minutes away.

"It knocked her confidence and to be honest with you I can't put it into words how it has taken her to where she was to where she is now.

"When you come home and you see a 12-year-old who should be running around but is lying in bed with a hot water bottle to try and ease the pain, it's never nice to be honest."

Marion is a member of Dulwich Dolphins Swimming Club and was a Surrey county champion in 2015 and an Independent Schools Association national champion in 2015 and 2016 in her age group.

The youngster, who still swims 14 hours a week despite the pain, is also part of the school cross-country and netball teams but has had to reduce her sporting activity due to her condition.

Ms Camphell-Cole, who works as a specialist nurse, explained that if Marion was to have the surgery in this country, it will involve spinal fusion, which would leave her back immobilised.

She said: "I can't even begin to tell you the impact it has had, especially on her. She was the Surrey county champion two years ago and went to the London swimming regionals in May this year and came away with three bronze medals.

"She has still managed to maintain her swimming but if the proposed [UK] surgery goes ahead it will leave her back absolutely immobilised so she won't be able to swim again."

Marion has been attending intense physiotherapy sessions over the past few weeks at Scoliosis SOS Clinic, in London, in an attempt to try and ease the pain.

So far £3,000 has been raised and Marion's mother is continuing to hold events to try and reach their mammoth target.

She admits it would be "devastating" if her daughter had to give up swimming.

"I wouldn't even begin to try to think about what it would do to her," said Ms Camphell-Cole.

"I do not want to begin to go there. If she goes swimming and has pain she battles through it and comes home crying and that is just devastating for her and myself.

"Swimming is her world and it's her life."

To donate to the JustGiving page and help pay for the £45,000 operation go to www.justgiving.com/crowdfunding/carolyn-campbell-cole

Source : Croydon Advertiser , 6th Sep 2017 

FITED: FIGHTING SCOLIOSIS WITH 3D TECHNOLOGY

“Just as a cast, braces and orthoses need to fit like a second skin”, says Akanksha Vyas, founder of Fited. Together with Erdem Ay, she’s running the tech start-up Fited, which – with photos and 3D printing – is revolutionizing a process that has basically been unchanged for the past hundred years. I talked to Akanksha about Fited’s e-health solution, designed to beat scoliosis.”

Akanksha, how would you describe Fited in one tweet?

“Fited makes 3D-prints braces and orthoses on the basis of normal and x-ray photographs.”

What exactly does Fited?

“Braces and orthoses protect and support the human body during recovery. As of now, Fited mostly makes braces for people suffering from the back-condition scoliosis. But later on, we want to expand the assortment by orthoses. Think, for instance, of knee braces, a band for a tennis elbow or an ankle-foot orthosis.”

How does Fited work?

“We take four pictures of the client in sports clothing and a few x-ray photographs. This is how we detect what the actual problem is, just as with the traditional approach. But those exact four photos are also sufficient for Fited to make a 3D design and print the actual brace or orthosis which fits well and offers support at the right spot.”

How is that done with a customized brace or orthosis?

“The operating physician or orthopedist takes x-ray photographs to make a diagnosis. Afterwards, they make a molding tool in the lab which is then handcrafted into the final product by a specialist. In principle, this is still the same process as around 100 years ago and highly time-intensive. This is what we want to change with Fited.”

What does the name ‘Fited’ mean?

“The name Fited comes from ‘fitted’. We can make customized and perfectly fitting braces and orthoses for everyone.”

What’s your vision?

“The market for braces and orthoses is highly segmented. Or put differently: The equipment and means are not everywhere available where they are needed. We want that people all over the world can benefit from Fited. This does not only improve living conditions but also helps to increase acceptance of these kinds of medical aids. You need very few resources and equipment to use Fited. That’s why it can easily be used in developing countries too.”

What made you start with Fited?

“Erdem’s mum suffers from scoliosis. She has had back pain for all her life but they diagnosed her with scoliosis only quite late. Only years later, she got a brace, but ran into the same issues as many others: The brace didn’t fit well, so she didn’t wear it. The consequences were pain as a daily companion and a lot of other complications too.”

What did you do about it?

“Erdem an  I used to work for a company that manufactures 3D-printed personalized inner soles. That’s where we learnt that the process has been the same for a long time, while there is a lot of promising technical possibilities out there. We saw an opportunity in combining innovative technology with our own experience to improve the condition of Erdem’s mum and many other patients like her.”

What’s the target group for Fited?

“Everyone who needs a brace. We work together with hospitals and physicians, mostly orthopedics. Scoliosis often starts in the age of ten or eleven, and is more common among girls. If kids wore a brace until they are 16 or 17, a surgery at a later moment in life can be prevented. 2% of the world’s population suffers from scoliosis, but only 30% are actually diagnosed with it.”

In which countries are you active?

“For now, we are focusing on the US, Turkey and the Netherlands. We chose these three countries because we both lived in the States when we started with Fited. Erdem originally comes from Turkey and has a lot of connections there. And the Netherlands are known for their open innovation culture which is a perfect starting point to enter the European market.”

Who are your competitors?

“One large competitor are the traditional scoliosis labs, who are making plastic braces and orthoses in the traditional way. Next to that, there is a company in the US (Unyq) and another on the UK (Andiamo), but they are not using photos to make the braces. Fited is also the only one exploiting the whole process.”

What is your revenue model?

“The selling price is at around 2000 to 3000 US-dollars. Physicians are the ones deciding whether they advise this to their patients. Fortunately, our product is covered by insurance.”

What’s on the Fited agenda?

“Currently, we are running pilots in several hospitals in Istanbul and the Netherlands. In the Netherlands, for instance, we work together with Lodewijk van Rhijn, head of the orthopedics department at the Maastricht University Medical Center. After consultation, he is testing our braces with several of his patients. The pilot runs until beginning 2018 and then we hope to launch our product.”

What are you doing to raise awareness for scoliosis?

“We are involved in a Scoliosis Awareness Program. It’s a cooperation with The Bayer Foundation. We developed an application that can detect all possible symptoms of scoliosis. With this, we hope to draw attention to scoliosis, to reach people all over the world and create a community. The earlier we can diagnose scoliosis in screenings, the more and better we can treat and cure it.”

What is your greatest challenge?

“In the beginning, we mostly focused on our product and how it works. But when we started with our pilots in the US and the Netherlands, we noticed that for 70% of the affected, scoliosis is diagnosed way too late. This has become our most important challenge to focus on right now, we do this together with The Bayer Foundation.”

Why did you sign up Fited for the Accenture Innovation Awards?

“We would like getting in touch with people who can contribute or even join our mission in increasing awareness for and acceptance of scoliosis. And of course, we also just want to reach more people in general. After all, our ultimate goal for the long-term is that everyone in this world is screened for scoliosis and has access to appropriate treatment.”



Source : Accenture Innovation Awards , 12th Sep 2017 

Emmett teen diagnosed with scoliosis hopes for innovative surgery

Mercy Roberts has always loved hiking, swimming, and being active, but these days she hasn't been able to be the 13-year-old she wants to be. At just 10 years old Mercy began complaining of back pain. That's when her sister noticed something strange.

"She called me in and said 'mom, take a look at her back.' and I leaned over and was rubbing her back and I said 'oh my goodness she has scoliosis'," explained Mercy's mother, Kitti Roberts. 

Back then her condition wasn't as aggressive. 

"My first thought was a couple of trips to the chiropractor will fix that right up. Little did we know that it wasn't quite that simple," said Kitti.

After doing a lot of research and wanting to stay ahead of the condition, Mercy's family took her to specialists right away who devised plans for treatment.

They thought they could at least stall the progression, but it didn't work, so they moved on to non-traditional methods.

"Yoga and all kinds of different weird exercises I found online," explained Kitti.

But still, nothing worked.

"Just to watch her condition worsen and worsen is very heartbreaking for myself, all of my siblings, and my parents," said Mercy's sister Autumn White.

"It's crushing. We as dads always want to take care of our kids and to be in a position where I can't fix something is very very difficult," said Mercy's dad, Robbie Roberts.

In only three years the condition has progressed to a state so severe, the pain is unbearable.

"Mercy actually has a double curve. She has almost an 'S' going on and her curves are both over 100 degrees which is very very significant," said Robbie.

Then, hope. A doctor in New York has agreed to perform an innovative surgery on Mercy, but the catch, because it's so new it isn't covered by insurance.

The family will have to pay the six-figure bill all out of pocket. 

"I've seen my siblings slash their budgets just to be able to put as much money towards this as possible. We are all putting stuff up on craigslist. We are thinking of any way that we  
can raise money," said White.

They've already raised more than 18,000 dollars, but for Mercy to get the surgery they still have a long way to go. 

"I just feel so humbled and awed and inspired at how people can give us so much to help," said Mercy.

"Myself and my entire family, we are a very pull yourself up by your bootstraps and get the job done and work as hard as you can. This is one of the few instances where I lack the capability to make this happen on my own," explained White.

Another family from Indiana whose daughter recently had the same surgery donated a Harley Davidson motorcycle to them. In order to raise funds, they are hoping to raffle the bike off by distributing 1000 tickets for a 100 dollar donation a piece, however, there is no purchase necessary in compliance with Idaho gaming laws.

"I just keep on thinking about the people who have it worse than me and realizing how brave they have been and how brave that all of my siblings have been in trying to help me. It just inspires me," said Mercy.

But Mercy isn't only hoping to have the surgery to change her life, she hopes that the surgery will also change people's lives around the world. 

"If I have this surgery then maybe it will become more common practice to use this surgery to make people better and it might change the world a little bit," said Mercy.

To See her video / help , pls visit on this website: http://www.kivitv.com/news/emmett-teen-diagnosed-with-scoliosis-hopes-for-innovative-surgery?page=2 

ADDING THIS METHOD OF CUPPING DECOMPRESSION AIDS IN THE TREATMENT OF SCOLIOSIS

Soft tissue manipulation has proven itself to be beneficial for scoliotic conditions, and vacuum manual therapy is providing a valuable missing link in treatment protocols.

Adding this method of decompression aids the tissue by releasing deep patterns that hold the bony structure in a forward or sideways twist associated with conditions such as hyperkyphosis, hyperlordosis and scoliosis.

Soft Tissue Memory

Neuromuscular function creates soft tissue memory from trauma, which could include trauma from an injury or repetitive movements. The three dimensional fascial system, as seen in “Strolling Under the Skin” by Jean-Claude Guimberteau, M.D., can also get stuck in position from the same causes.

The strands of fascia become tangled and dehydrated from inflammation, and vacuum decompression helps draw fluids into the area while it gently pulls the strands apart.

The Diaphragm

One of the most critical areas to address in working with spinal curvatures is the diaphragm. If all or part of the diaphragm is elevated, the surrounding structures have no choice but to accommodate the abnormality.

The diaphragm can be affected by so many life experiences, such as compression during birth, a multitude of other childhood injuries and illnesses, falls that “knocked the wind out” of the lungs, asthma or chronic bronchitis, pregnancy with a large child and even traumatic experiences such as car accidents or physical abuse.

One case that stands out for me is a young man who was beaten and robbed in his home. His spine had curved into the position he took to protect himself and would not release.

While it was a challenge to access his diaphragm, it proved to be the main cause of his dysfunction. Once it was released to return to its normal position, the upper body structures could revert as well.

Vacuum manual therapy makes the process of releasing the diaphragm so much easier, and if manual techniques such as massage therapy are added in, accessing the diaphragm is much more comfortable after the vacuum has been used to pull it down.

Hypertonic vs. Hypotonic Tissue

Once the diaphragm has been addressed, the next step is to release hypertonic tissue and strengthen hypotonic muscles. For most spinal curvatures, anterior and posterior muscle groups must be included to address all compensatory patterns.

Neck

For the anterior neck, use the vacuum cup to release the contracted sternocleidomastoid and platysma, with special attention to the clavicular attachments.

Use a smaller cup to soften scalenes. For the posterior neck, use a smaller cup and deeper vacuum pressure to tone splenius capitus and splenius cervicus, along with levator scapulae.

Anterior Torso

Release anterior deltoid and pectorals, especially the attachments along sternum. Then release serratus anterior, anterior intercostals, rectus abdominus and obliques from their locked and contracted positions.

Posterior Torso

Tone erector spinae, posterior intercostals, latissimus, serratus posterior, along with rhomboids, obliques, trapezius, levator scapula and posterior deltoid.

The vacuum cup may be parked over the belly or attachments of any weak muscle just before the muscle is activated to contract the tissue while it is elongated up in the cup.

Rotator Cuff Muscles

It is vital to address the forward rotation of the shoulders that occurs with most spinal curvature conditions. Assess restrictions and treat subscapularis, supraspinatus, infraspinatus, teres minor and the upper bicep to tone hypotonic and release hypertonic tissue.

Working with Rods, Plates and Cables

Many people have had corrective surgeries and appliances implanted after being diagnosed with scoliosis or other spinal curvature disorders, while others are told to simply live with the condition.

Vacuum manual therapy can help relieve soft tissue issues, and this gives appliances the ultimate opportunity to assist the structure to stay in place.

One very fascinating case presented itself recently, a young woman who has had multiple surgeries since late childhood that included implantation of Harrington rods, plates and cables. We began work on the diaphragm and lower intercostals, and discussion began about childhood injuries.

Due to her posture, I began work on the anterior torso and then moved up to release the anterior neck. As the session progressed to the posterior of the body, evidence of some kind of trauma showed itself in the clients’ shoulders and neck.

As it turned out, she had found out from her mother that she suffered a very serious fall down cement steps when she was 3 or 4 years old. She had basically fallen down the stairs on her head.

Patterns showed up in her tissue indicating compensatory patterns and restrictions. I followed them around her body with the vacuum cup. By the time her session was done, her shoulders were lying flat on the table and her posture had changed considerably. Now the appliances can work even better to keep her structure in place, and a series of treatments will be required to recondition the soft tissue.

The results in her first appointment were a great indication of the positive outcome from a customized treatment protocol.

Childhood Injuries

As seen in the case above, there can be a logical event in childhood that could begin the development of scoliosis, hyperkyphosis and hyperlordosis. Working with the extra-large cups and observing the tissue can offer big clues about the origin of dysfunction in the form of restrictions and discolorations.

These can clearly be seen through the vacuum cup as it is moved over the area, and restrictions look like large dents, while the discolorations can range from black, brown, yellow, gray, red and even green. All of this is old blood and other substances that became trapped at the site of injury.

The truly interesting part is helping the person being treated to remember what incident or activity could be showing itself in their tissues.

Childhood events such as falls in gymnastics and ballet, equestrian pastime injuries, car and bike accidents or even years of mucking out horse stalls can clearly show themselves in the restrictions and colors under the skin.

It is an amazing moment to realize that even experiences so long in the past can still have an effect on our current posture and movement.

Vacuum manual therapy provides a new window into assessment of spinal curvature conditions, as well as aiding in the release and re-patterning of the tissues to maintain optimal spinal health.

The addition of powerful micro-cup magnets into the treatments can also help produce positive results.

Effective Treatment

There is so much to learn about scoliosis and other spinal curvature disorders, and truly effective treatment incorporates a team of professionals that often includes medical doctors, chiropractors, physical therapists, exercise physiologists and massage therapists.

Specific exercises, some of which involve a special “ladder” or even particular yoga movements that are designed to help support correction of curvatures, are also a big part of an effective treatment regimen.

About the Author

Anita Shannon has been licensed in massage therapy and cosmetology since 1983. An educator since 1990, she appears at national chiropractic, massage, and spa conventions and currently presents workshops on ACE Massage Cupping and MediCupping at international locations since developing these brands of bodywork in 2002. She has published multiple articles in Les Nouvelles Esthetiques, Massage Today, Massage & Bodywork and Massage Magazine and has created five educational videos on vacuum therapies. She was inducted into the Massage Therapy Hall of Fame in 2011.




Source : Massage Magazine , 21st Sep 2017 

Non-invasive scoliosis procedure gaining traction in U.S.

In the operating room at Shriners Hospital in Tampa, surgeon Joseph Khoury isn't using sharp instruments or rods.

Instead, he's straightening Maxine Payton's back with Mehta Casting, a non-invasive procedure to treat scoliosis. First described in Europe in the 1960's, the technique slowly began gaining traction here in the U.S. In the last ten years.

"Nothing can cure scoliosis except this. This can actually cure scoliosis in infants because casting is so much more powerful than bracing," said Dr. Khoury.

Maxine was put under anesthesia and suspended above the operating table. The team created molds by putting pressure on the top and bottom of the 3-year-old's spine.

"It's not just wrapping a cast around a child's body. There's a very specific way you have to push on the spine to get it to grow out of the curve," Dr. Khoury described.

Maxine's journey began more than two years ago, on Easter, when she was nine months old.  Her parents Jessica Votour and Robert Payton noticed something was off in a picture of her.

"We saw the rib hump and we saw her hip just kind of jutted in a little," said her mom, Jessica.

"You could see on the spine right in the middle, between the shoulder blades how like three or four of the vertebrae stuck straight out," added her dad, Robert.

An X-ray showed a 78-degree curve in her spine. It was so twisted, doctors weren't sure what they were seeing. Six Mehta Castings later, Dr. Khoury saw progress.

"This is the X-ray we took just before her last cast. It was 49 degrees, so her curve is getting smaller," he said.

It reduced the curve to 37 degrees. He hoped the next cast will reduce it even more. But as Maxine nears her fourth birthday, time may be running out. As her growth rate slows, so do the results, making early diagnosis critical.

"The magic is kids before the age of two are growing twice as fast as a teenager at their fastest," said Dr. Khoury.

For video , Pls visit at : http://www.fox13news.com/health/non-invasive-scoliosis-procedure-gaining-traction-in-us

A teenage girl went to Germany for a life-changing operation to straighten her spine

Emiah Ellis' friends and family raised the £30,000 she needed to make the trip


                         Emiah Ellis, 14, had an operation to straighten her spine

A teenage girl has undergone a life-changing operation in Germany to correct her spine - after £30,000 was raised.

Emiah Ellis, 14, of Brynna, was diagnosed with Scoliosis, a condition where the spine curves and twists, a few years ago.

But after the money was raised by family, friends and the local community, Emiah has been able to undergo the surgery and is now back at home recovering.




Emiah with Dr Trobisch in Germany

Mum Menna Garland-Ellis said the problem started when Emiah, who has always been very sporty, started getting hurt after practice on a regular basis.

“Two years ago she was in a swimming squad and into athletics, doing a lot of training, and every time she was coming home, she was complaining about a bad shoulder thinking she’d pulled a muscle,” Menna said.

“I took her to a physio, thinking you can’t pull a muscle every time, there must be something else going on. The physio said if you look, her shoulders aren’t in alignment and she had to be referred to hospital.

“They told us she had Scoliosis of the spine.”

Emiah was then faced with a choice – have an operation that could potentially restrict her movement or do nothing and stay in pain.

Emiah opted to have the life-changing pioneering operation, where instead of rods being placed in her back, and therefore restricting her movement, she would have nuts and bolts.

She underwent Vertebral Body Tethering (VBT), also known as fusionless surgery, which preserves flexibilty and growth by not stiffening the spine.

But in order to have the operation she had to travel to Germany to see Dr Trobisch and his team at the Eifelklinik clinic in Simmerath, and that would involve paying £30,000.



Emiah is now hoping to get back to being her sporty-self

As well as funds being raised by family, friends and the community, local company Persimmon Homes also gave a donation of £1,000 as part of their Community Champions campaign, which sees up to £60,000 handed out to good causes across the UK each month.

Menna said: “We were going down the route of having an operation where they put rods in your back but her curve is very low down, so they said it could affect her movement.

“In the meantime, I saw a story of another young girl from Haverfordwest on the news and I tracked her mother down and asked them what’s this operation all about? They went to America, so we went to Philadelphia first for a consultation in a charity-funded hospital but Emiah didn’t meet the criteria.

“We’d also just heard about this doctor who was under the same team in America but had returned to live in Germany and he was setting up a practice in Germany. So we went to see him and he told us that he thought he could do it, so she was booked in with him and had the operation on August 16.

“Instead of using rods, they don’t operate from the back, they operate from the sides and made two slits on her side, deflated her lung and inserted six screws placed on her spine and pull a thread through the nuts and bolts and when they pull it tighter, it pulls the spine in straight.

“But what that means is she can still bend, she’s still got her flexibilty.”

Now Emiah is back at home and has stunned the doctors with her impressive recovery.

Her mum said: “She was really positive. They kept commenting how brave and determined she was. She was walking up the stairs on the third day after her operation. They said they’ve never had somebody do so much so quick.

“She can’t do anything now while she’s healing and we have to wait for the scars to heal before she can go back to swimming. But she should be able to continue. It’s going to take a while to build up to the same levels she was at before, but she’s done really well.

“We had to raise a lot of money and this is a great help. It’s early days, but the operation will hopefully mean Emiah will keep her flexibility and live a normal everyday life.”


Source : Wales Online , 23rd Sep 2017